Podcasts about myalgic

fWotD Episode 2761: Myalgic encephalomyelitis/chronic fatigue syndrome Welcome to Featured Wiki of the Day, your daily dose of knowledge from Wikipedia’s finest articles.The featured article for Monday, 25 November 2024 is Myalgic encephalomyelitis/chronic fatigue syndrome.Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling chronic illness. People with ME/CFS experience profound fatigue that does not go away with rest, sleep issues, and problems with memory or concentration. Further common symptoms include dizziness, nausea and pain. The hallmark symptom is a worsening of the illness which starts hours to days after minor physical or mental activity. This "crash" can last from hours or days to several months.The cause of the disease is unknown. ME/CFS often starts after an infection, such as mononucleosis. It can run in families, but no genes that contribute to ME/CFS have been confirmed. ME/CFS is associated with changes in the nervous and immune systems, as well as in energy production. Diagnosis is based on symptoms and a differential diagnosis because no diagnostic test is available (diagnosis by exclusion).The illness can improve or worsen over time, but full recovery is uncommon. No therapies or medications are approved to treat the condition, and management is aimed at relieving symptoms.: 29  Pacing of activities can help avoid worsening symptoms, and counselling may help in coping with the illness. Before the COVID-19 pandemic, ME/CFS affected 2 to 9 out of every 1000 people, depending on the definition. However, many people fit ME/CFS diagnostic criteria after contracting long COVID. ME/CFS occurs more often in women than in men. It most commonly affects adults between ages 40 and 60 but can occur at other ages, including childhood.ME/CFS has a large social and economic impact, and the disease can be socially isolating. About a quarter of those affected are unable to leave their bed or home.: 3  People with ME/CFS often face stigma in healthcare settings, and care is complicated by controversies around the cause and treatments of the illness. Doctors may be unfamiliar with ME/CFS, as it is often not fully covered in medical school. Historically, research funding for ME/CFS has been far below that of diseases with comparable impact.This recording reflects the Wikipedia text as of 00:30 UTC on Monday, 25 November 2024.For the full current version of the article, see Myalgic encephalomyelitis/chronic fatigue syndrome on Wikipedia.This podcast uses content from Wikipedia under the Creative Commons Attribution-ShareAlike License.Visit our archives at wikioftheday.com and subscribe to stay updated on new episodes.Follow us on Mastodon at @wikioftheday@masto.ai.Also check out Curmudgeon's Corner, a current events podcast.Until next time, I'm neural Amy.

Professor Ric Arseneau MD is a clinical professor at the University of British Columbia in Vancouver, Canada, and a specialist in internal medicine with expertise in Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/ CFS), Fibromyalgia and Long COVID. He is interviewed today about ME/CFS by Dr Funmi Okunola MD.REFERENCES1. Walitt B, Singh K, LaMunion SR, Hallett M, Jacobson S, Chen K, Enose-Akahata Y, Apps R, Barb JJ, Bedard P, Brychta RJ. Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome. Nature Communications. 2024 Feb 21;15(1):907.2 Project ECHO at the University of New Mexico3 Dr Ric Arseneau Website4. ME TV 5 "Family & Friends" - ME TV Video6 2003 Canadian Consensus Criteria for ME/CFS7 2016 Definition for Fibromyalgia (FM)8 Vahratian A, Lin JM, Bertolli J, Unger ER. Myalgic encephalomyelitis/chronic fatigue syndrome in adults: United States, 2021–2022. US Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics; 2023 Dec 1.9 "Chronic Fatigue Syndrome More Common than Previous Estimates" - Medical News Dec 202310 Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, Reeves WC, Lloyd A. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study.Bmj. 2006 Sep 14;333(7568):575.

Monica Michelle is joined by author Sue Jackson.Sue lives with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Lyme disease.In this episode, Monica and Sue discuss: Sue's pathway to diagnosis Parenting with chronic illness and parenting a child with chronic illnessManaging ME/CFS from diagnosis to creating routinesUsing books to cope emotionallyWriting a book while having chronic fatigueTIMESTAMPS00:46 Sue's diagnosis and how she manages her symptoms 13:03 Parenting with a chronic illness25:02 COVID-19's impact on chronic illness 30:35 Books as a form of escapism and connection42:00 The challenges of writing and the importance of routines with chronic illness The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Hosted on Acast. See acast.com/privacy for more information.

Rebecca Tolin brings her wild story to the podcast today as she prepares for her upcoming class at the end of January.  Chronic Fatigue Syndrome, Myalgic encephalomyelitis, fibromyalgia, Epstein-barr, post-viral syndrome, adrenal exhaustion, leaky gut syndrome, interstitial cystitis, parasites, anxiety, among others, were the labels for her life for a long time.  She's going to tell the story of how and when pain began, and how she eventually got through it. Check out her website and sign up for her newsletter here: RebeccaTolin.com This episode is brought to you by Jeannie Kulwin Coaching! Listen to Jeannie's healing journey here: https://podcasts.apple.com/us/podcast/the-mind-and-fitness-podcast/id1291091376?i=1000532375002 Learn more about her 1:1 coaching program here www.jeanniekulwin.com  Follow Jeannie Kulwin on Instagram- https://www.instagram.com/jeanniekulwincoaching/ Become a Patron of the Show!  You can support the show with as little as a few dollars per month - show your support and get a shoutout every single week to thousands of people across the world: https://www.patreon.com/themindandfitnesspodcast Join the Facebook Group to participate in show topics: The Deleters of Pain Give us a Like on Facebook: The Mind and Fitness Podcast If you are interested in advertising your online service or business, email me at eddy@themindandfitnesspodcast.com

Welcome! Today, we're discussing the unexpected and unusual presentations of Lyme disease that I've encountered in my practice.Case Study: Unexplained Foot Pain One of my patients experienced severe foot pain, even while walking to the bathroom. A podiatrist diagnosed him with plantar fasciitis, and he tried various treatments including icing, NSAIDs, stretching, iontophoresis, shoe inserts, and cortisone injections. Despite these efforts, his foot pain persisted. In addition to foot pain, he suffered from exhaustion, poor sleep, impaired concentration, neck and back pain, mood disturbances, palpitations, lightheadedness, migratory pains, and sensitivity to light and sound. Remarkably, his foot pain and other symptoms resolved following treatment for Lyme disease. Expected Lyme Disease Presentations In my practice, the expected presentations of Lyme disease include:- Erythema migrans- Bell's palsy- Chronic Neurologic Lyme disease- Neuropsychiatric Lyme- Postural Orthostatic Tachycardia Syndrome (POTS)- Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)- Lyme carditis- Lyme arthritis Unusual Lyme Disease Presentations However, I've also encountered several unusual presentations of Lyme disease that resolved with treatment. These include:- Thumb pain- Intermittent blue color of the hands and feet- Distorted vision and floaters- Uveitis- Atypical seizures- Temporomandibular joint (TMJ) disorder- Tinnitus- Movement disorders- ALS-like and MS-like presentations- Parkinsonian symptoms- Dementia- Gastroparesis- Mold sensitivity- Small intestinal bacterial overgrowth (SIBO)- Mast cell activation syndrome (MCAS)- Ehlers-Danlos syndrome (EDS)- Median arcuate ligament syndrome (MALS)- Fibromyalgia- Chronic fatigue syndrome- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)- Functional and somatic disorders- Anxiety, depression, OCD, and ADHD The Challenge of Diagnosis It can be challenging to determine whether Lyme disease is the cause of these unusual presentations, as patients may have multiple conditions. Proper diagnosis and treatment are crucial for resolving these complex symptoms. Conclusion Understanding the wide range of Lyme disease presentations helps us better identify and treat this complex illness. If you or someone you know has unexplained symptoms, consider consulting a Lyme-literate doctor. Thank you for watching, and stay tuned for more insights on Lyme disease.

Dr Shane is joined by EAGG regulars Chris KP and Suzi, and 20 special guests as part of the ‘20 PHD Students in 20 minutes' program. A wide range of expertise and insight covered in this special, including but not limited to; anti-hypertension medication, eating disorders in a prison environment, diabetes, fatty liver disease, forensic anthropology, Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), stem cell research, oral health in boarding school, sleeping gene cells and much, much more!

Dr. Sarah Mayhill – Diagnosis and treatment of Chronic Fatigue Syndrome, Myalgic Encephalitis and Long Covid…with TRE's Selina MacKenzie

Total Runtime:01:11.17Hi and welcome to Health Bunker Lyme Podcasts, today I have the pleasure of welcoming nutritionist Clare Wilson.In these podcasts with my guests we'll attempt to address many different health concerns caused by genetic faults, environmental factors, medical interventions, and diet, which in turn go on to cause a catalogue of different health problems.Today we will be discussing mitochondrial cell damage that is prominent in Myalgic encephalomyelitis aka ME otherwise known in the US as Chronic fatigue, we also discuss things that helped resolve ours and Clare's clients symptoms to eventually turn around the condition.I'd like to thank everyone who is or has ordered supplements from our new Health Bunker Shop, me and my wife are growing the range and hope to have more products going live each month.If you want to order Vitamin C Powder, or our new Complete Multi Formula which contains essential vitamin, mineral, and amino acid panel as well as 72 trace mineral all in one capsule, please use the discount code HB-SF25OFF on all HB branded products - https://shop.healthbunker.co.uk/collections/allIf you want to contact us for more info, email info@healthbunker.co.ukIf you want to contact Clare here email is clarewilsondetox@icloud.comDom's Health Bunker Sodium Ascorbate [VitC] PowderHealth Bunker SupplementsUse discount Code on all HB branded products HB-SF25OFFhttps://www.sheepfarm.co.uk/music/Sheep Farm Merch Storehttps://www.youtube.com/@sheepfarmstudios1322https://www.podomatic.com/podcasts/sheepfarmstudioshttps://odysee.com/@sheepfarmstudios:fhttps://rumble.com/user/SheepFarmStudio

About 20% of people who have recovered from COVID-19 experience circulatory impairment, abnormal ventilatory pattern, or Myalgic encephalomyelitis (ME/CFS) according to a 2021 study published in the Journal of the […] The post Living with Long COVID and Myalgic encephalomyelitis appeared first on WORT-FM 89.9.

This week we will discuss severe Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  Our guest is Galen Warden, the mom to six adult children, one being her son James Strazza.  Galen is now a full time caregiver to James due to the severity of his disease.  Here are her words:  "James was a healthy young man until he very slowly, because of medical ignorance and poor advice, became weaker and sicker following a severe case of the Epstein Barr Virus when he was just 19. After a few years, he slowly lost his ability to drive, to stand in his kitchen and prepare food for himself, then to walk more than a few steps, to use an electric wheelchair, and finally, to even sit up if carried onto a commode. He's been 100% bed bound for three years. What is this bizarre disease that so many medical doctors prefer to pass off as psychological, psychosomatic or self-inflicted? Myalgic Encephalomyelitis was, in the past, known only as Chronic Fatigue Syndrome. An unfortunate name because it's so easily dismissed as simple chronic fatigue, familiar to many with autoimmune diseases. ME/CFS is entirely different. It's a disease not known, not taught, but not rare. Just rarely acknowledged, and more rarely understood.... ME appears to be a post-viral disease. The onset can be caused by Epstein Barr, Dengue Fever, Covid 19, and other viral illnesses. Now, research is so urgent because Long Covid is impacting thousands who are unaware of the potential that they could end up like James. Post-viral Covid could easily continue to progress to Severe ME/CFS if patients are not aware of how to manage their overwhelming weakness and fatigue. They must rest and never push themselves. They need the early support of their families to pick up the burden of making meals, driving them, helping them rest as much as possible. Because, if they don't allow them to rest now, caring for them will become a very heavy burden. These patients, with their desperate families, their disbelieving caregivers and puzzled doctors, are why I'm compelled to add documenting our experience to my long list of weighty obligations."

Where I attempt to puzzle out explaining some of my coping strategies. Also ombudsman update plus an article that includes me should be coming out soon update. I talk about MS and ME briefly in this ep so here are some links about that: viral origins of myalgic encephalomyelitis, some of the history of its abdication, it's relationships to MS and AIDS and particularly to Epstein-Barr which was the virus that got me https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1011523#ppat.1011523.ref025 And this one draws distinct parallels between MS and ME and shows the seriousness and deadly nature of myalgic encephalomyelitis- Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics | BMC Medicine | Full Text https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-205 More info on MS and Epstein-Barr Clonally expanded B cells in multiple sclerosis bind EBV EBNA1 and GlialCAM https://www.nature.com/articles/s41586-022-04432-7 Gfm for those who want it https://gofund.me/cff39173 (Also bear with me guys as I try to find the perfect location for the microphone. I have to play with levels post recording when it turned out it was too close so I hope that's okay. I don't know have the energy or brain power to rerecord. Le sigh. It's hard to have the sound quality at the level that I want it to be while hanging off a cliff by a branch like a cartoon animal trying to be a magical Ted talk to drs, politicians, bureaucrats +now ombudsman, etc while also trying to navigate scarcity and illness. So I appreciate your forbearance

TRANSCRIPTEric Topol (00:00):Hello, this is Eric Topol, and it's really a delight for me to welcome Hannah Davis who was the primary author of our recent review on Long Covid and is a co-founder of the Patient-Led Research Collaborative. And we're going to get into some really important topics about citizen science, Long Covid and related matters. So, Hannah, welcome.Hannah Davis (00:27):Thank you so much for having me.Eric Topol (00:29):Well, Hannah, before we get into it I thought because you had a very interesting background before you got into the patient led research collaborative organization with graphics and AI and data science. Maybe you could tell us a bit about that.Hannah Davis (00:45):Sure. Yeah. Before I got sick, I was working in machine learning with a particular focus on generative models for art and music. so I did some projects like translating data sets of landscapes into emotional landscapes. I did a project called The Laughing Room, where there was a room and you went in and the room would listen to you and laugh if it thought you said something funny, . and then I did a lot of generative music based on sentiment. So I, I did a big project where I was generating music from the sentiment of novels and a lot of kind of like critical projects, looking at biases in data sets, and also curating data sets to create desired outcomes in these generative models.Eric Topol (01:30):So, I mean, in a way again, you were ahead of your time because that was before ChatGPT in November last year, and you were ahead of the generative AI curve. And here again, you're way ahead in in the citizen science era as it particularly relates to the pandemic. So, I, I wonder if you could just tell us a bit I think it was back, we go back to March, 2020. Is that when you were hit with Covid?Hannah Davis (01:59):Yes.Eric Topol (02:00):And when did you realize that it wasn't just an acute phase illness?Hannah Davis (02:06): for me, honestly, I was not worried at all. I, my first symptom was that I couldn't parse a text message. I just couldn't read it, thought I was tired. an hour later, took my temperature, realized I had a fever, so that's when I kind of knew I was sick. but I really just truly believed the narrative I was going to get better. I was 32 at the time. I had no pre-existing conditions. I just was, you know, laying around doing music stuff, not concerned at all. And I put a calendar note to donate plasma two weeks out, and I was like, you know, I'm going to hit that mark. I'm going to donate plasma, contribute, it'll be fine. And that day came and went. I was still, you know, pretty sick with a mild case. You know, I didn't have to be hospitalized.(02:49):I didn't have severe respiratory symptoms. but my neurological symptoms were substantial and did increase kind of over time. And so I, I was getting concerned. Three weeks went by, still wasn't better. And then I read Fiona Lowenstein's op-ed in the New York Times. They were also very young. They were 26 at the time, they had been hospitalized, and they had this prolonged recovery, which we now know as Long Covid. and they started the Body Politic Support Group joined that saw thousands of people with the same kind of debilitating brain fog, the same complete executive functioning loss, inability to drive, forgetting your family members' names who were all extremely young, who all had mild cases. and that's kind of when I got concerned because I realized, you know, this was not just happening to me. This was happening to so many people, and no one understood what was happening.Eric Topol (03:49):Right. extraordinary. And, and was a precursor, foreshadowing of what was to come. Now, here it is, well over three years later. And you're still affected by all this, right?Hannah Davis (04:02):Yes. Pretty severely.Eric Topol (04:04):Yeah. And I learned about that when I had the chance to work with you on the review. You were the main driver of this review, and I remember asking you, because I, I didn't know anyone in the world that was tracking Long Covid like you and to be the primary author. And then you sent this outline, and I had never seen an outline in all my years in academic medicine. I never saw an outline like this of the review. I said, oh my God, this is incredible. So I know that during that time when we worked on the review together, along with Lisa McCorkell and Julia Moore Vogel, that, you know, there, there were times when you couldn't work on it right there, there were just absolutely, you would have some good days or bad days. And, and that's the kind of, is that kind of the way is, how it goes in any given unit time?Hannah Davis (04:55):I think generally, I, I communicated as like 40% of my function is gone. So, like, I used to be able to have very, very full days, 12 hour days would work, would socialize, would do music, whatever. you know, I, I have solidly four functional hours a day. on a good day, maybe that will be six. On a bad day, that's zero. And when I push myself by accident, I can get into a crash that can be three to seven days easily. Hmm. and then I'm, then I'm just not, you know, able to be present. I don't feel here. I don't feel cognitively able, I can't drive. And then I'm just completely out of the world for a bit of time.Eric Topol (05:35):Yeah. Wow. So back in the early days of when you were first got sick and realized that this was not going to just go away, you worked with others to form this Patient -Led Research Collaborative organization, and here you are, you didn't have a medical background. You certainly had a data science and computing backgrounds. But what were your thoughts? I mean, citizen science has taken on more of a life in recent years, certainly in the last decade. And here there's a group of you that are kind of been leading the charge. we'll get to, you know, working with RECOVER and NIH in just a moment. But what were your thoughts as to whether this could have an impact at working with these, the other co-founders?Hannah Davis (06:27):I think at first we really didn't realize how much of an impact we were going to have. The reason we started collecting data in the first place really was to get answers for ourselves as patients. You know, we saw all these kind of anecdotes happening in the support group. We wanted to get a sense of which were happening the most at what frequency, et cetera. and it really wasn't until after that when like the CDC and WHO started reaching out, asking for that data, which was gray literature at the time that we kind of realized we needed to formalize this and, and put out an official paper which was what ended up being the second paper. But the group that we formed really is magical, I think like, because the primary motivator to join the group was being sick and wanting to understand what was happening. And because everyone in the group only has the kind of shared experience of, of living with Long Covid, we ended up with a very, very diverse group. Many, many different and I think that really contributed to our success in both creating this data, but also communicating and, and doing actionable policy and advocacy work with it.Eric Topol (07:42):Did you know the folks before? Or did you all come together because of digital synapses?Hannah Davis (07:47):Digital synapses? I love that. Absolutely. No, we didn't know each other at all. they're now all, you know, they're my best friends by far. you know, we've been through this, this huge thing together. but no, we didn't meet in person until just last September, actually. And many of them we still haven't even met in person. which makes it even more magical to me.Eric Topol (08:13):Well, that's actually pretty extraordinary. So together you've built a formidable force to stand up for the millions and millions of people. As you wrote in the review, 65 million people around the world who are suffering in one way or another from Long Covid. So just to comment about the review --you know, I've been working in writing papers for too long, 35 years. I've never, in my entire career, over 1300 peer reviewed papers on varied topics, ever had one that's already had 900,000 downloads, is the fourth most cited paper and Altmetric since published the same timeframe in January of all 500,000 peer-reviewed papers. Did you ever think that the, the work that, that you did and our, you know, along with Lisa and doing, and I would ever have this type of level of interest?Hannah Davis (09:16):No, and honestly, it's so encouraging. Our, our second paper to me did very well. and, you know, was, was widely viewed and widely cited, and this one just surpassed that by miles. And I think that it's encouraging because it communicates that, that people are interested, right? People, even if they don't understand what long covid is, there is a huge desire to know. And I think that putting this out in this form, focusing on the biomedical side of things really gives people a, a tool to start to understand it. And from the patient side of things, more than any other paper I've heard we, we get so many comments that are like, oh, I brought this to my doctor and, you know, the course of my care change. Like he believed me and he started X treatment. and that, that's the kind of stuff that just makes us so, so meaningful. and I'm so, so grateful that, that we were able to do this.Eric Topol (10:16):Yeah. And as you aptly put it, you know, a work of love, and it was not easy because the reviewers were not not all of them were supportive about the real impact, the profound impact of long covid. So when you now every day you're keeping track of what's going on in this field, and there's something every single day. one of the things, of course is that we haven't really seen a validated treatment all this time, and you've put together a list of candidates, of course, it was in the review, and it constantly gets revised. What are some of the things that you think are alluring from preliminary data or mechanisms that might be the greatest unmet need right now of, of getting some relief, some remedy for this? What, what, what's your sense about that?Hannah Davis (11:13):I think the one I'm most excited about right now are JAK/STAT inhibitors. And this is because one of the leading researchers in viral onset illness Ron Davis and that group believe that basically they're, they have a shunt hypothesis, and that means they, they basically think there's a switch that happens in the body after you've, you've had a viral illness like this, and that that switch can actually be unswitched. And that, to me, as a patient, that's very exciting because, you know, that that's what I imagine a cure kind of looks like. and they did some computational modeling and, and identified JAK/STAT inhibitors as one of the promising candidates. so that's from like the, like hypothetical side that needs to be tested. And then from the patient community, from some things we're seeing I think really easily accessed ones include chromolyn sodium.(12:14):So these are prescription antihistamines. they're both systemic. So Coen has been seeming to work for patients with brain fog and sleep disorders. And chromolyn sodium particularly works in, in patients with gastrointestinal mast cell issues. People are going on to kind of address the micro clots. I, for me personally, has been one of the biggest changers game changers for my brain fog and kind of cognitive impairment type things. but there's so many others. I mean, I think we, we really wanna see trials of anticoagulants. I'm personally really excited to start on ivabradine which is next up in my queue. And, and seems to have been a, a game changer for a lot of patients too. I V I G has worked for patients who are, have been able to get it, I think for both I V I G and ivabradine. Those are medications that are challenging to get covered by insurance. And so we're seeing a lot of those difficulties in, in access with a couple of these meds. But yeah, just part of, part of the battle, I guess,Eric Topol (13:32):You know, one of the leading of many mechanisms that in this mosaic of long covid is the persistence of virus or virus components. And there have been at least some attempts to get some Paxlovid trials going. Do you see any hope for just dealing, trying to inactivate the virus as  a way forward?Hannah Davis (13:54):Absolutely. Definitely believe in the viral persistence theory. I think not only Paxlovid, but other a covid antivirals. I know that Steve deas and Michael Paluso at U C S F are starting a couple long covid trials with other covid antivirals that yeah, for sure. I think they all obviously need to be trialed A S A P. And then I also think on the viral persistence lens, ev like almost everyone I know has viral reactivation of some sort like EBV, CMV,  VZV, you know, we obviously see a lot of chickenpox or shingles reactivations and antivirals targeting those as well I think are really important.Eric Topol (14:41):Yeah. Well, and I also, just the way you're coming out with a lot of this, you know terminology and, you know science stuff like I V I G for intravenous immunoglobulin and for those who are not, you know, just remember, this is a non-life science expert who now has become one. And that goes back again to the review, which was this hybrid of people who had long covid with me who didn't to try to come up with the right kind of balance as to, you know, what synthesizing what, what we know. And I think this is something the medical profession has never truly understood, is getting people who are actually affected and, and becoming, you know, the real experts. I mean, I, I look to you as one of the world's leading authorities, and I learn from you all the time.(15:35):So that goes to RECOVER. So there was a long delay in the US to recognize the importance of long covid. Even the UK was talking to patients well before they ever had a meeting here in the us, but eventually, somehow or other they allocated a billion dollars towards long covid research at the NIH. And originally, you know, fortunately Francis Collins, when he was director, saw the importance, and he, I learned bequeathed that 2 of the NIH institutes, one of the directors, Gary Gibbons visited me recently because of a negative comment I made about RECOVER. But before I go over my comment, you've been as he said, you, and Lisa McCorkell ,among others from the Patient-led Collaborative have had a seat at the table. That's a quote from Gary. Can you tell us your impression about RECOVER you know, in terms of at least they are including Patient-Led research folks with long covid as to are they taking your input seriously? And what about the billion dollars ?Hannah Davis (16:46):Oh, boy. tricky question. I don't even know where to start. Well, I mean, so I think recover really messed up by not putting experts in the field in charge, right? Like we are, we have from the beginning have needed to do medical provider education at the same time that all these studies started getting underway. And that was just a massive amount of work to try to include the right test to convince medical professionals why they weren't necessary. all that could have been avoided by putting the right people in charge. And unfortunately, that didn't happen. unfortunately recovers our, our best hope still or at least the, the best funded hope. so I really want to see it succeed. I think that they, they have a long way to go in terms of, of really understanding why patient representation matters and, and patient engagement matters.(17:51):I, you know, it's been a couple years. It's, it's still very hard to do engagement with them. it's kind of a gamble when you get placed on a, a committee if they are going to respect you or not. And, and that's kind of hard as people Yeah. Who are experts now, you know, I've been in the field of Long Covid research more than anyone really I'm working with there. I, I really hope that they improve the research process, improve the publication process. the, a lot of the engagement right now is, is just tokenization. you know, they, they have patient reps that are kind of like just a couple of the patient reps are kind of yes men you know, they, they get put on higher kind of positions and things like that. but they're, I think there's 57 patient reps in total spread across committees. we don't have a good organizing structure. We don't know who each other are. We don't really talk to each other. there, there's room for a lot of improvement, I would say, well,Eric Topol (18:59):The way I would put it is, you know, you kind of remember it like when you have gatherings where there's an adult table, and then there's the kiddie's table. Absolutely. Folks are at the kiddy table. I mean, yeah. And it's really unfortunate. So they had their first kind of major publication last week, and it's led to all sorts of confusion. you wrote about it, what did we, what did we glean from that, from that paper that was reported as a 10% of people with covid go on to Long Covid, and there were clearly a risk with reinfections. Can you kind of review that and also what have we seen with respect to the different strains as we go on from, from the Wuhan ancestral all the way through to the  various lineages of omicron. Has that led to differences in what we've seen with Long Covid?Hannah Davis (19:56):Yeah, that's a great question and one that I think a lot of people ask just because it, you know, speaks to the impact of long covid on our future. I think not just this paper, but many other papers at this point, also, the, the ONS data have shown that that Long Covid after omicron is, is very common. I think the last ONS data that came out showed of everyone living with Long Covid in the UK. After Omicron, which was the highest group of all of them. we certainly saw that in the support groups also, just, just so many people. but people are still getting it. I think it's because it, most cases of Long Covid happen after a mild infection, 75 to 90%. And when you get covid, now, it is a mild infection, but whatever the pathophysiology is, it doesn't require severe infection.(20:50):And you know, where I think we hopefully have seen decreases in like the, the pulmonary and the cardiovascular like organ damage types we're not seeing real improvements at all in kind of the long term and the neurological and the ones that end up lasting, you know, for years. And that's really disappointing. in terms of the paper, you know, I think there were two parts of the paper. There were those, those items you mentioned, which I think are really meaningful, right? The, the fact that re infections have a higher rate of long covid is like ha needs to have a substantial impact on how we treat Covid going forward. that one in 10 people get it after Omicron is something we've been, you know, shouting for, for over a year now. and I think this is the first time that will be taken seriously.(21:42): but at the same time, the way RECOVER communicated about this paper and the way that you talked to the press about this paper shows how little they understand the post-viral history right, of, of like thinking about a definition.  Why wouldn't they know that would upset patients? You know, that and the fact that they, in my opinion you know, let patients take the brunt of that anger and upset you know, where they should have been at the forefront, they should have been engaging with the patient community on Twitter is really upsetting as well. Yeah.Eric Topol (22:20):Yeah. And you know, I, when I did sit down with Gary Gibbons recently, and he was in a way wanting to listen about how could recover fulfill its goals. And I said, well, firstly, you got to communicate and you got to take the people very seriously not just as I say, put 'em at the Kiddie table, but, you know, and then really importantly is why isn't there a clinical trial testing any treatment? Still today, not even a single trial has been mounted. There's been some that have been, you know, kind of in the design phase, but still not for the billion dollars. All that's been done is, is basically following people with symptoms as already had been done for years previously. So it's, it's just so vexing to see this waste and basically confusion that's been the main product of RECOVER to date and exemplified by this paper, which is apparently going to go through some correction phases and stuff. I mean, I don't know, but whether that's going to the two institutes that it's, it's N H L B I, the National heart, lung and Blood, and the Neurologic Institute, NINDS, that are the two now in charge of making sure that RECOVER recovers from where it's, it's at right now. And yeah, so lack of treatments, and then the first intervention study that was launched incredibly was exercise. Can you comment about that?Hannah Davis (23:56):It's unreal. You know, it's, it, it just speaks to the lack of understanding the existing research that's in this space. Exercise is not a treatment for people with hem. It has made people bedbound for life. The risks is are not, the risks are substantial. that there was no discussion about it, that there was no understanding about it. That, you know, even patients who don't have pem who wouldn't necessarily be harmed by this trial deserve better, right? They still deserve a trial on anticoagulants or literally anything else than exercise. And there's, it just, it, it's extremely frustrating to see it, it would have been so much better if it was led by people who already had the space, who didn't have to be educated in post exertional malaise and the, the underlying underpinnings of it. and just had a sense of, of how to continue forward and, you know, patients deserve better.(24:55):And I think we're, we're really struggling because yeah, there's, there's going to be five trials as I understand it, and that's not enough. And none of them should be behavioral or lifestyle interventions at all. you know, I think it also communicates just the, the not understanding how severe this is. And I get that it's hard. I get that when you see patients on the screen, you think that they're fine and that's just how they must look all the time. But recover doesn't understand that for every hour they're asking patients to engage in something that's an hour, they're in bed, you know, that, that they're, they take so much time away from patients without really understanding like the, the minimum they should be able to do is, is understand the scope and the severity of the condition, and that we need to be trialing substantially more serious me treatments than, than exercise. right,Eric Topol (25:54):Right, right. And also the recognition, of course, as you know very well about the subtypes of long covid. So, you know, for example, the postural orthostatic tachycardia syndrome pots and how, you know, there's a device, so you don't have to always think about drugs where you put it in the back of your ear and it's neuromodulator to turn down your vagus nerve and not have the dizziness and rapid heart rate when you stand and all the other symptoms. And, you know, it costs like a dollar to make this thing. And why don't you do a trial with that? I mean, that was one of the things, it doesn't have to always be drugs, and it doesn't have to, it certainly shouldn't be exercise. But you know, maybe at some point this will get on on track. Although I'm worried that so much of the billion dollars has already been spent and no less the loss of time here, I people are suffering. Now, that gets me to this lack of respect lack of every single day we are confronted with people who don't even believe there's such a thing as long covid after all this time, after all these people who've had their lives profoundly disrupted.(27:04):What, what can you say about this?Hannah Davis (27:07):It's just a staggering, staggering lack of empathy. And I think it's also fear and a defense mechanism, right? People want to believe that they have more control over their lives than they do, and they want to believe that, that it's not possible for them personally to get a virus and then never recover and have their life changed so substantially. I really genuinely believe the people who don't believe long covid is real at this point you know, have their own things going on. And just, yeah,Eric Topol (27:38):It's kinda like how Covid was a hoax, and now this is, I mean, the, you, you just, ofHannah Davis (27:44):Course, but it's true, like it's happened with, it happened with me, CF s it happened with HIV AIDS. Mm-hmm. someone just showed me a brochure of, of a 10 week lifestyle exercise intervention for aids, you know, saying that you could positively think your way out of it. All that is, is, is defense mechanism, just, yeah. You know, it's repeating the same history over and over.Eric Topol (28:07):Well, I think you nailed it. And of course, you know, it was perhaps easier with Myalgic encephalomyelitis when it weren't as many people affected as the tens of millions here, but to be in denial. the other thing is the young people perfectly healthy that are those who are the most commonly affected. a lot of the people who I know who have been hit are like you, you know, very young and, and you know like Julia in my group who, you know, was a big runner and, you know, can't even go blocks at times without being breathless. And this is the typical, I mean, I saw in clinic just yesterday, an older fellow who had been in the hospital for a few weeks and has terrible long covid. And yes, the severity of covid can correlate with the sequela, but because of just numbers, most people are more your phenotype. Right, Hannah.Hannah Davis (29:08):Right, exactly. It's a weird like math thing for people to wrap their head around. Like, yes, if you're hospitalized, the chance of getting long covid is much, much higher than if you were not hospitalized. But because the vast number of cases were not hospitalized, the vast number of long cases, long covid cases were not hospitalized. but I think like all of these things are interesting clues into the pathophysiology. You know, we also see people who were hospitalized who recover faster than some of these, the neurocognitive mild, my mild encephalomyelitis subtypes for sure. I think all of that is, is really interesting and can point to clues about kind of what is, what is happening at the core.Eric Topol (29:54):Yeah. And that I wanted to get into before I wrap up some of the things that are new or added since our review in published in January. so I just recently reviewed the brain in long covid with these two German studies, one of which showed the spike protein was lighting up in the reservoir, the kind of initial reservoir, the brain, the skull, and the meninges. the, the, basically the layers covering the brain, the, particularly the skull bone marrow. And that's where all these immune cells are in high density that are patrolling the brain. And so it really implicated spike protein per se, in people who've had covid. and then the other German study, which was so striking in mild covid, the majority of people where they had it 10 months later, all this signature by m r i, quantitative, m r i of major inflammation with free water and this so-called mean diffusivity, which is basically the leaking and you know, the inflammation of the brain.(31:01):And so, and that's as long as they follow the people, you know, if they followed 'em three years, they'd probably still see this. And so there's a lot of brain inflammation that is linked to the symptoms as you've described. You know, the brain fog, the memory executive function. But we have no remedy. We have no way, how can we stop the process? How can we turn it around like, as you mentioned, like a jak stat inhibitor in other ways that we desperately need to get into testing. so that was one thing I, I wonder, I mean, I think people who have had the symptoms of cognitive effects know there's something going wrong in their brain, but here is, you know, kind of living proof that what there's sensing is now you can see it. thoughts about that?Hannah Davis (31:52):I mean, I think the research is just staggering. It's so, so validating as someone, you know, who was living this and living the severity of it, you know, without research for years, it's, it's wonderful to finally see so many things come out. but it's overwhelming research. And I, I don't understand kind of the lack of urgency. Those are two huge, huge studies with huge implications. you know, that the, that the spike would still be in the skull like that in the, in the bone marrow like that. and the neuroinflammation I think, you know, feels very obvious in terms of what, like the symptoms end up presenting. why aren't we trialing things like the, the, this is just destroying people's lives. Even if you don't care about people's lives, like it will destroy the economy. Like people are still getting this, this is not decreasing. these are really, really substantial tangible injuries that are happening.Eric Topol (32:52):Yeah, I know. And, and there's not enough respect for preventing this. The only way we know to prevented it for sure is just not to get covid, of course. Right. And then, you know, things like vaccines help to some extent. The magnitude, we don't know for sure, you know, maybe metformin helps but, you know, prevention and everyone's guard, not everyone, but you know, vast majority, you know, really let down at this point when there's not as much circulating virus as there has been. Now, another area where it has really been lit up since our review was autoimmune diseases. So we know there's this common link in some people with long covid. There's lots of auto antibodies and self-destruction that's ongoing. The immune system has gone haywire. But now we've learned, you know, this much higher incidence of rheumatoid arthritis and lupus and across, you know, every one of the autoimmune diseases.(33:44):So the impact besides the brain autoimmune diseases and then the one that just blows me away at the beginning of the pandemic, even in the first year there were starting to see more people showing up with type two diabetes and say, ah, well it must be a coincidence. And now there are 12 large studies, every single one goes through of a significant increase in type two diabetes and, and possibly even autoimmune diabetes, which makes sense. So this is the thing I wanted to clarify cuz a lot of people get mixed up about this, Hannah, there's the symptoms of long covid, some of which we reviewed, many of the long lists we haven't. But then there's also the sequela to organ hits like the diabetes and immune system and the brain and you know, also obviously kidney and heart and on and on. Can you help differentiate? Cause a lot of people get mixed up by all this stuff.Hannah Davis (34:46):Yeah, I mean I think, you know, we started out with symptoms because that's what we knew, that's what we were talking about. but I do think it's helpful to start, and I, I do think it would be helpful to do a big review on conditions and that does include ME/CFS and Diso but also includes diabetes, includes heart attacks and strokes are includes dementia risks. and yeah, I think the, the difficulty with kind of figuring out what, what percent of long covid are each of these conditions is really biased by the fact that for that, doctors can't recognize me CFS and dysautonomia that it doesn't end up in the EHR data. And so we can't really do these large scale like figuring out the percentage of what is what. but I think like, I, I saw someone describe long covid recently as like a, a large scale neurocognitive impairment emergency, a a large scale cardiovascular event emergency. I think those are extremely accurate. the immune system dysfunction is really severe. I really would like to see the conversation start moving more toward the, the conditions and the pathophysiologies based on what we're finding yeah, more than, more than just the symptoms.Eric Topol (36:15):Right. And then, you know, there's this other aspect of the known unknown, so with two other viruses. So for example, back in 1918 with influenza, it, it took 15 years to see or more that this would lead to a significant increased risk of Parkinson's disease. And then with polio, the post-polio syndrome showed up up to 30 years later with profound progressive muscular atrophy and, you know, falls and all sorts of major neurologic hits that were due for from the original polio virus. And so, yeah, some of the things that we're learning here with long covid hopefully will spill over to all these other post-infectious processes. But I think what's emphasizing in our discussion is how much more we, we really do need to learn how we desperately need some treatments, how we desperately need to have the respect for this syndrome that it deserves which still isn't there, it's just, it's unfathomable to me that we still have people dissing it on a daily basis and, and not, you know, a small minority, but actually a pretty strident group that's, that's not so small.(37:35):Now, before you wrap up, what have I missed here? Hannah with you, because this is a rarefied opportunity to have a sit down with you about what's going on in long covid and also to emphasize citizen science here because this is, if there's anything I've ever seen in my career to show the importance of citizen science, it's been the long covid story. you as one of the leaders of it. So have I missed something?Hannah Davis (38:05):I feel like we actually covered a pretty good bit. I would say maybe just for people listening, emphasizing that long covid is still happening. I think, you know, so many people that we see recently got long covid after getting vaccinated or having a prior infection and just kind of relaxing all their precautions and they're, they're angry. You know, the, the newer group of long Covid folks are angry because they were lied to that they were safe, and that's completely reasonable. you know, that it's still happening in, in one in 10 vaccinated omicron infections is a huge deal. and, and I think yeah, just re-emphasizing that, but overall that, yeah, you know, this is very serious. I think there's my, my MO for Twitter, really, honestly, despite all the, the accusations of fear mon mongering, I really don't put extreme stuff online, but I really do believe that this is this is currently leading to, you know, higher rates of, of heart attacks.(39:08):I do believe that we will see a, a wave of early onset dementia that is honestly is happening already you know, happening in my friend group already. and like you said there, there's a lot of unknowns that can be speculated about the fact that we see E P V reactivation in so many people. Are we gonna see a lot of onset multiple sclerosis mm-hmm. you know, lymphomas other E B V sequelae, like the danger's not over the danger's actually, like pretty solidly. there's pretty solidly evidence for some, some pretty serious things to come and you know, I keep saying we gotta get on top of it now, butEric Topol (39:55):Well, I, I always the, unfortunately, some, some people don't realize it, but the eternal optimist that we will get there, it's taking too long, but we got to ratchet up the heat, get projects like RECOVER  and elsewhere in the world to go in high gear and, you know, really get to testing the promising candidates. You so have aptly outlined here and in your writings. you know, I think this has been an incredible relationship that I've been able to develop with you and your colleagues and I've learned so much from you and I will continue to be following you. I hope everyone listening that if they don't already follow you and, and others that are trying to keep us up to speed, which you know, just this week again, there was a Swiss study, two year follow up showing that the number of people that were still affected significantly with long covid symptoms at two years was 18%.(40:58):That's a lot of folks, and they were unvaccinated, but still, I mean, they, in order to have two year follow up, you're going to see a lot of people who before the advent of vaccines. So this, if you look at the data, the research carefully and it gets better quality as time goes on, because we have control groups, we have matched controls, we have, you know, hopefully the beginning of randomized trials of treatment. we'll hopefully get some light. And part of the reason we're going to get there is because of you and others, getting us fully aware, keeping track of things, getting the research committee to be accountable and not just pass off the same old stuff, which is not really understanding the condition. I mean, how can you start to really improve it if you don't even understand it? And who are you going turn to to understand it? you don't, you don't just look at, you know, MRI brain studies or immune lab studies. You got to talk to the folks who, who know it and know it so well.. All right, well this has been hopefully one of many more conversations we'll have in the future and at some point to celebrate some progress, which is what we so desperately need. Thank you so much, Hannah.Hannah Davis (42:19):Thank you so much. Absolute pleasure.LinksOur Long Covid review with Lisa McCorkell and Julia Moore-Vogelhttps://www.nature.com/articles/s41579-022-00846-2The Brain and Long Covidhttps://erictopol.substack.com/p/the-brain-and-long-covidHeightened Risk of Autoimmune Diseaseshttps://erictopol.substack.com/p/the-heightened-risk-of-autoimmuneCovid and the Risk of Type 2 Diabeteshttps://erictopol.substack.com/p/new-diabetes-post-acute-covid-pascThanks for listening and reading Ground Truths.Please share if you found this informative.Your free subscription denotes your support of this work. Should you decide to become a paid subscriber you should know that all proceeds go to support Scripps Research. That has already helped to bring on several of our summer high school and college interns. Get full access to Ground Truths at erictopol.substack.com/subscribe

Nicholas Farrugia has Fibromyalgia and Myalgic Enchephalomyelitis and will being joining us today to talk about invisible disabilities in Malta. He is associated with the ME, CFS and Fibromyalgia Alliance of Malta. You can learn more about the organisation via the links below: https://maltacvs.org/voluntary/me-cfs-fibromyalgia-alliance-malta-2/ https://www.facebook.com/me.cfs.fm.AllianceMalta Feel free to leave a review of this show.

Monica Michelle is joined by author of The Lady's Handbook For Her Mysterious Illness, Sarah Ramey.Sarah Ramey lives with:Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)Complex regional pain syndrome (CRPS) Postural orthostatic tachycardia syndrome (POTS)VulvodyniaMast cell activation syndrome (MCAS) *This episode was recorded back in 2020 but is very much still topical today. In this episode, Sarah Ramey and Monica discuss: being denied painkillersnon-traditional medicine and being forced to embody the female ‘warrior' archetypethe lack of empathy in the medical worldnavigating specific illnesses within a world of cancer and other leading illnessesbreaking the gender norms, emotional intelligence, and moreTIMESTAMPS01:53 - Sarah's Story8:17 - Being Denied Painkillers12:00- Forced into Becoming a Wellness “Warrior” with Non-Traditional Medicine17:00 - Feeling Bad for Your Symptoms19:00- Empathy in the Medical World23:13 - “WOMIS” - A Woman with a Mysterious Illness25:31 - Chronic Fatigue Syndrome within a World of Other Issues29:01 - Working From Home33:49 - David Bowie's Labyrinth and the Parallels 38:40 - Breaking the Gender Normative 48:06 - Final ThoughtsShow notes and the full transcript are located on the episode page. Thank you and enjoy! Hosted on Acast. See acast.com/privacy for more information.

Dr. Leonard Jason, world renowned father of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research, shares his very personal story with this illness along with what he has learned in his 30+ years of ME/CFS research. The energy envelope, yo-yo effect, prospective studies looking for biological markers of vulnerability, long COVID and so much more is discussed. Many in the POTS community also suffer from ME/CFS. Do you recognize yourself in this episode? Learn more about Dr. Jason's work. You can read the transcript for this episode here: https://tinyurl.com/potscast104 Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you! If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/ Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Myalgic encephalomyelitis/chronic fatigue syndrome has long been a condition surrounded by doubt in the medical community. How could someone be completely exhausted from doing a crossword puzzle? Dr. Lucinda Bateman, an ME/CFS expert, explains the mental and physical toll that plagues the people who suffer from this condition.

Dr. Tania Dempsey, MD, ABIHM is Board-Certified in Internal Medicine and Integrative and Holistic Medicine. She received her MD degree from The Johns Hopkins University School of Medicine and her BS degree from Cornell University.  She completed her Internal Medicine Residency at New York University Medical Center. In 2011, she founded her own Integrative medicine practice which has evolved into AIM Center for Personalized Medicine, a destination Medical Center in Purchase, NY, focusing on complex, multi-system diseases. Dr. Dempsey is a leading expert in MCAS, Mast Cell Activation Syndrome, Dysautonomia, ME/CFS, (Myalgic encephalo-myelitis/chronic fatigue syndrome), Tick-Borne Infections and Autoimmunity. She is an accomplished international speaker and writer and is well published in the medical literature on topics related to MCAS.  She was involved in a research study in collaboration with the TILT (Toxicant Induced Loss of Tolerance) team at University of Texas Health Science Center in San Antonio, which led to the publication: Mast cell activation may explain many cases of chemical intolerance. Her most recent paper from January 2022 is titled “Post-HPV-Vaccination Mast Cell Activation Syndrome: Possible Vaccine-Triggered Escalation of Undiagnosed Pre-Existing Mast Cell Disease?”.    

Dr Keith Kahn-Harris has been living with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since his early twenties. He acknowledges that he is privileged in that he was able through support of his family to complete his graduate studies and become a professor, researcher and writer. Despite his accomplishments, he continues to strive to balance his chronic illness and live his full life. I was intrigued by an article he published in The Guardian: "I gave up hope of a cure for my chronic condition. And it's made me happier than ever before." We talk about the idea of hope - when it is helpful and when it is hurtful. Maybe leaning into accepting what is may be more helpful than hoping for something that will never be.

Dr. Aleid Hillebrand was raised in Amsterdam and decided that she wanted to become a veterinarian at a young age. She attended veterinary college in Belgium and went into small animal practice in England after graduation. About four years after being in practice, she developed a chronic debilitating illness that was diagnosed as Myalgic encephalomyelitis/chronic fatigue syndrome. She returned home to the Netherlands and was unable to work for over ten years. In 2012 she was diagnosed with Lyme's Disease and was successfully treated through holistic methods. After discovering the power of holistic medicine and Traditional Chinese Medicine, she took the IVAS acupuncture course in 2016 and was trained as a human acupuncturist in 2017. She has extensive training in other areas of acupuncture, including food therapy, Dr. Tan's Balance Method, scalp acupuncture, and ear acupuncture. She is currently a self-employed acupuncturist, treating both human and animal patients. Please enjoy this conversation with Dr. Aleid Hillebrand as we discuss her schooling, the demands of private small animal practice, her illness and recovery, and her journey into holistic medicine.

Catherine Caine lives with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia. As much of her disability isn't visible to a casual observer, it's a struggle to make others understand her needs and respect her boundaries. Now she's working to help others feel empowered to get the support and assistance they need.  See omnystudio.com/listener for privacy information.

Anne Wilson, CEO of Emerge Australia talks about the need to change the Clinical Guidlines for diagnosis and treatment of Myalgic encephalomyelitis/Chronic Fatigue Syndrome, Produced and hosted by Ian Woolf. Support Diffusion by making a contribution Support Diffusion by buying through affiliate links

DOWNLOAD AUDIO: https://api.spreaker.com/v2/episodes/49639310/download.mp3https://canprojectsinfo.wixsite.com/canprojects/mecfsThis 2022 ME/CFS Awareness Month, and ME/CFS Awareness Day May 12th, C.A.N. PROJECTS will launched this exhibition space in the LINK TO HOPE GALLERY with information, articles, and a range of special guest speakers who have direct experience with ME/CFS.ME/CFS Awareness and SolidarityMyalgic Encephalomyelitis also known as Chronic Fatigue Syndrome is a profoundly isolating and debilitating neurological condition that affects millions of patients, families, friends, people and society.Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest.Co-Founder and Project Coordinator here at C.A.N. PROJECTS Séin Mackay is also a patient of ME/CFS who has been living with the condition for close to 20 years. In this disscussion Séin discusses some of his experiences with fellow Co-Founder and Project Coordinator Chris Sneyd.---------------------------------------------------------------------If you are struggling please, please do reach out to someone who will listen or help. There is lots of help available."Contact a Samaritan If you need someone to talk to, we listen. We won't judge or tell you what to do."Phone (Ireland) 116 123Samaritans Websitehttps://www.samaritans.org/ireland/how-we-can-help/contact-samaritan/------------------------------------------------------C.A.N. PROJECTS: Culture, Arts, Nature & Wellness, is an outreach project advocating that active engagement in creative and positive outlets, is beneficial to our health and environment.#TalkShow #Podcast #OpenDialogue #DiversityandInclusion------------------------------------------------------

We need energy to live and truly enjoy life. Dr. Sarah Myhill breaks down chronic fatigue syndrome, how the right diet can improve your sleep and gut health, and why it's time to pay attention to the fuel we give our bodies.    In this episode, Cathy and Sarah discuss:  Defining chronic fatigue syndrome and why Western medicine struggles to address it  Dr. Myhill's motivation for focusing on mitochondria and chronic fatigue syndrome  The importance of consuming the right foods vs. processed foods, sugars, and carbs Benefits and drawbacks of adopting a paleo ketogenic diet  Why sufficient sleep is necessary and how sugars and carbohydrates disturb sleep  Understanding core temperature and how to use it to help monitor your health   How our gut health and microbiome is impacted by sugars and carbohydrates Whether someone can completely rid themselves of chronic fatigue syndrome Details about Dr. Myhill's books            Memorable Quotes: “The energy delivery mechanisms of the body are not dissimilar to energy delivery mechanisms in a car, and for your car to go, we've got to have the right fuel in the tank.” “We live life to get out there and do things and have fun and we need energy to do that.”  “Core temperature is a very useful measure of the sum total of energy delivery mechanisms.”     Dr. Sarah Myhill qualified from the Middlesex Hospital Medical School, London, honours viva, 1981, since when she has been working continuously in NHS general and private practice. This was part time work when her daughters Ruth and Claire were born in 1982 and 1984. She has a special interest in treating chronic fatigue syndrome and estimates she have seen over 9,000 patients with CFS and/or ME. This includes patients with post viral fatigue, occupational exposure to organophosphates, Gulf War Veterans, aerotoxic pilots, vaccination, 9/11 syndrome, sick building syndrome etc. In 1997, she gave evidence to two government working parties, one of which looked into this problem, and one into the health problems of silicone breast implants.  She is affiliated to the Association of Naturopathic Physicians and the General Naturopathic Council. Dr. Sarah Myhill has been helping sufferers from debilitating chronic conditions for over 30 years with an approach that combines all the benefits of current scientific knowledge and medical testing and treatments with an expanding appreciation of the importance of nutrition and lifestyle. She is currently a Naturopathic Physician, Member of the British Society for Ecological Medicine and was formerly an active member of the General Medical Council. She's written many books and has won several awards including the Peoples Book Prize Winner and was a British Medical Association Short-listed author. She has also co-authored three medical papers on Chronic Fatigue Syndrome and mitochondrial dysfunction and is highly regarded for her expertise in this area.   Author/co-author of seven books: Diagnosis of CFS and ME Ecological Medicine The PK Cookbook Prevent and Cure Diabetes The Infection Game The Energy Equation NEW RELEASE: Green Mother - Families Fit for the Future   Listen To Episode 184 Below:       Mentioned In This Episode: Books: https://www.amazon.com/Diagnosis-Treatment-Chronic-Syndrome-Encephalitis/dp/160358787X   https://www.amazon.com/Green-Mother-Families-Fit-Future/dp/1781612048/   Website: https://www.drmyhill.co.uk/   Links to resources: Health Coach Group Website https://www.thehealthcoachgroup.com/

An overview of Myalgic encephalomyelitis, chronic fatigue syndrome (ME/CFS), the diagnosis, symptoms and challenges faced by the patient community.

When COVID and herpes viruses team up by Ian Woolf From 2018: Brett Lidbury talks about diagnostic tests for Myalgic encephalomyelitis/Chronic Fatigue Syndrome Hosted and produced by Ian Woolf Support Diffusion by making a contribution Support Diffusion by buying through affiliate links

A true wellness warrior, Dan Neuffer, shares with us how he overcomes the biggest battle of his life for 7 years, suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Postural Orthostatic Tachycardia Syndrome. A former physicist, a young family man, Dan was once bed bounded to the idea of never getting his life back up again. A smile he couldn't fake for his kids at one Christmas dinner, gifted him the determination to find a way to recover.    This episode digs deep into Dan's personal journey dealing with his sickness. He shares insights on the nature of this group of diseases, its conditions, and how he tackled them back to wellness again. Since his full recovery in 2010, he has proven to himself that it is possible to achieve what he once thought was impossible.   Through many years of sharing his story, Dan has created ANS REWIRE a comprehensive online program to support more people with their recovery journey from this syndrome. The program is now being used in over 60 countries around the world to help people recover from these illnesses.   Dan also wrote two books to help others with the disease; CFS Unravelled, and Discover Hope – 7 steps to help you rediscover hope and cope better with Fibromyalgia, ME/CFS, POTS, PVFS & MCS.     Check out his program and other resources here: cfsunravelled.com.   For transcript or to watch this episode instead, click here.   Shownotes: 01:29 - Start out as a physicist, what drove you into that area of professional space originally?  His love for numbers and his amusement in lasers from a very young age led him to study lasers and optoelectronics.    02:43 - So you were struck down literally with a whole plethora of a disease profile that included, Myalgic and Stefano, Myalgic Encephalomyelitis, Fibromyalgia, chronic fatigue syndrome, et cetera, this whole group of diseases. What are some of the contributing factors that can lead to this group of conditions that you were dealing with?  Dan explains the various triggers that can lead to the illness and that's different for each individual.    04:58 - Can you talk me through why there's so much uncertainty regarding the diagnosis in the first place? Dan calls it an invisible illness, a disease that its symptoms cannot be easily verified through medical tests. With a variety of symptoms, it is confused into being differentiated into many different illnesses. But from his experience, Dan classifies them under one umbrella when he looks at their causes rather than focusing on the symptoms.     08:30 - So you went on a journey of six and a half to seven years of dealing with being critically unwell. How did you actually cope to survive those? With honesty, Dan shares the extremely difficult journey he's gone through with his illness. The severity of his state he discussed here, as he looked back at that time, got him into accepting that he was not going to recover. One Christmas where I couldn't fake a smile for his kids, got him crawled out of that state to make a conscious decision to seek a way to recovery.   14:50 - So what did you find and how did you actually get to that point in time where you felt that you were well again and obviously functioning as you hoped to?  Through his research, Dan dived deep into the root causes of what he'd experienced. Instead of looking to treat the symptoms, he started to ask why they were happening. That's when he began to see the solutions, one of those being him learning about the autonomic nervous system.   17:51 - Where do we get our magnesium from in our normal day-to-day dietary intake?   Magnesium can be found in a range of food, however, Dan expresses that to return to wellness, we need to address the root cause.   21:12 - So what were some of the other avenues, pathways and mechanisms for recovery? What did you find?  Dan explains the connection he made through his discoveries in treating his illness. He looked into the cellular metabolism, autonomic nervous system and more importantly through his own observation of his own behaviours. Brain training was a big process he had to learn to manage through difficult times.   30:03 - How are you training people to get through the illness conditions through your program? Dan shares that his comprehensive program is all about getting people to utilise the strategies provided they can do at home daily. While not having the answer to this complicated illness, having ealistic expectations and complimenting his strategies have proven to improve the health of many.   35:49 - What is your daily practice look like to self-manage now so that you potentially never have a relapse again in the future? What does a normal day look like to you?  With the strategies he had learned and shared with others in his program, Dan is now able to live his life normally without being cautious of his health at all.    38:22 - What is your daily practice look like to self-manage now so that you potentially never have a relapse again in the future? What does a normal day look like to you?  To me, wellness means not knowing about it. Not thinking about it. That's what wellness means to me. Right. Because I think when you can just engage in life without any awareness of wellness, you've probably got it.   

Chronic fatigue syndrome (CFS), called myalgic encephalomyelopathy (ME) in other countries, is one of my least favorite topics. It is just so slippery, and we understand very little about how it comes about, how to treat it, and how massage therapy might help. We are likely to see more cases of CFS/ME soon, as this symptomatic profile is common in people with long COVID. What is chronic fatigue? And how can massage therapy be helpful? Join me for an exploration of this complex and frustrating topic to get to some possible solutions for a client who lives in pain.   Sponsors:     Anatomy Trains: www.anatomytrains.com      Books of Discovery: www.booksofdiscovery.com       Host Bio:                    Ruth Werner is a former massage therapist, a writer, and an NCBTMB-approved continuing education provider. She wrote A Massage Therapist's Guide to Pathology, now in its seventh edition, which is used in massage schools worldwide. Werner is also a long-time Massage & Bodywork columnist, most notably of the Pathology Perspectives column. Werner is also ABMP's partner on Pocket Pathology, a web-based app and quick reference program that puts key information for nearly 200 common pathologies at your fingertips. Werner's books are available at www.booksofdiscovery.com. And more information about her is available at www.ruthwerner.com.                                     Recent Articles by Ruth:                   “Pharmacology Basics for Massage Therapists,” Massage & Bodywork magazine, July/August 2021, page 32,     “Critical Thinking,” Massage & Bodywork magazine, May/June 2021, page 54,                              Check out ABMP's Pocket Pathology: www.abmp.com/abmp-pocket-pathology-app               Resources:   Alraek, T. et al. “Complementary and Alternative Medicine for Patients with Chronic Fatigue Syndrome: A Systematic Review,” BMC Complementary and Alternative Medicine 11 (2011): 87.   Foundation for Mitochondrial Medicine. “Chronic Fatigue Syndrome.” May 24, 2018.    Jacobson, Eric. “Structural Integration, an Alternative Method of Manual Therapy and Sensorimotor Education,” Journal of Alternative and Complementary Medicine 17, no 10 (2011): 891–99. doi:   Jones, James. F. et al. “Complementary and Alternative Medical Therapy Utilization by People with Chronic Fatiguing Illnesses in the United States,” BMC Complementary and Alternative Medicine 7 (2007): 12. doi:   MECFS_KeyFacts.pdf. Accessed July 2021.   NINDS. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Standards.” Accessed July 2021.    Wang, Ji-hong et al. “Effects of the Intelligent-Turtle Massage on the Physical Symptoms and Immune Functions in Patients with Chronic Fatigue Syndrome,” Journal of Traditional Chinese Medicine 29, no. 1 (2009): 24–8. doi:    Anatomy Trains is a global leader in online anatomy education and also provides in-classroom certification programs for structural integration in the US, Canada, Australia, Europe, Japan, and China, as well as fresh-tissue cadaver dissection labs and weekend courses. The work of Anatomy Trains originated with founder Tom Myers, who mapped the human body into 13 myofascial meridians in his original book, currently in its fourth edition and translated into 12 languages. The principles of Anatomy Trains are used by osteopaths, physical therapists, bodyworkers, massage therapists, personal trainers, yoga, Pilates, Gyrotonics, and other body-minded manual therapists and movement professionals. Anatomy Trains inspires these practitioners to work with holistic anatomy in treating system-wide patterns to provide improved client outcomes in terms of structure and function.                     Website: anatomytrains.com                     Email: info@anatomytrains.com                      Facebook: facebook.com/AnatomyTrains                     Instagram: instagram.com/anatomytrainsofficial                     YouTube: www.youtube.com/channel/UC2g6TOEFrX4b-CigknssKHA            

Myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS for short, is a composite term for a constellation of fatigue, pain, cognition issues and other symptoms of unknown cause. Peter Rowe, a ME/CFS expert at Johns Hopkins, says this also describes many cases of so-called ‘long Covid.' Rowe: People can have really very mild respiratory illnesses with Covid […]

This week we talked to Dr. Sadie Whittaker, the Chief Scientific Officer of Solve ME/CFS Initiative- a nonprofit whose mission is to find a cure for & end Myalgic encephalomyelitis/chronic fatigue syndrome. The developments with ME/CFS are paving the way to understanding Long Covid. She is also the Chief Scientific Officer of You + Me: a registry and biobank that collects patient-recorded data & biological samples that are passed on to researchers to drive discovery & cure! Sweet! “I'm a big believer that information is power - when you're dealing with an illness, you as the individual know more about what you're going through than any other person alive,” she says and we couldn't agree more. In this episode we celebrate the creation of the vaccine and the innovation and sense of community it brings us. Sadie brings to the You+Me Registry a deep understanding of the scientific discovery, drug development, and drug commercialization processes, as well as extensive experience in engaging members of the healthcare community.If you or a loved one is suffering from Long Covid symptoms, create an account with youandmeregistry.com. Even if you're not suffering Long Covid symptoms anymore, you can still log your old symptoms! Contributing your input could help pave the way to a cure for Long Covid. Additionally, Raymond is on a road trip across the United States so we're happy to introduce Laura Wendt to the airwaves! Laura is our social media manager and you have probably seen her on our IG live. She's an amazing dog mom, stage manager,  and friend - we're lucky to have her on our team. Thanks, Laura! 

In this episode, listeners continue to learn more about what actually happened during the nationally known Tahoe Flu outbreak in Incline Village, Nevada. In addition, Erik helps us to understand more about the investigation into Chronic Fatigue Syndrome, how it got lumped into Myalgic encephalomyelitis (ME), and the lack of integrity displayed by researchers and medical doctors during this time.  If you've been affected by mold and want to contribute to the cause, visit our Patreon or GoFundMe page to donate today.Patreon - patreon.com/exposingmoldGoFundMe - gofund.me/daf1233eWe understand the huge financial loss mold causes. You can do your part by Liking, Sharing, and Commenting on our content. We need your support to raise awareness of this devastating illness so that people can get the help they deserve. Transcript:https://bit.ly/3ekpXaWResources:[1] Dr. Gary Holmes definition of Chronic Fatigue Syndrome, 1988 - https://bit.ly/3nNotsN[2] Holmes Chronic Fatigue Syndrome article, 1989 - https://bit.ly/3eSpvjp[3] Dr. Charles Lap, South Carolina symphony outbreak, 1984 - https://bit.ly/33fBthw[4] Dr. Stephen Strauss, Epstein-Barr Virus research papers, 1985 - https://bit.ly/3aOUbAR,https://bit.ly/3vsiqfQ[5] Information on Drs. Byron Hyde, Gordon Parrish, and Alexis Shelokov -https://bit.ly/3egOAp2[6] Dr. Eric Ryll, outbreak in Sacramento at Mercy San Juan Hospital, 1985 - https://bit.ly/3nMrxWd[7] HLBV turned HHV6 virus - https://bit.ly/3b33vBc, https://bit.ly/3h2c6IgSupport the show (https://www.gofund.me/daf1233e)

After multiple treatments were unsuccessful, Justin and his wife had settled into the reality of life with her chronic illness. At a recent appointment, their doctor mentioned a promising new study in which some Myalgic encephalomyelitis (ME) patients saw improvements when adding a new medication. Listen in as Justin shares what it feels like to have a glimmer of hope and as he and Allison talk about the experiences they have had over the years of having, losing, and being devastated by hope. Links: The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness That Stole His Son How to be Sick Zoey's Extraordinary Playlist

After multiple treatments were unsuccessful, Justin and his wife had settled into the reality of life with her chronic illness. At a recent appointment, their doctor mentioned a promising new study in which some Myalgic encephalomyelitis (ME) patients saw improvements when adding a new medication. Listen in as Justin shares what it feels like to have a glimmer of hope and as he and Allison talk about the experiences they have had over the years of having, losing, and being devastated by hope. Links: The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness That Stole His Son How to be Sick Zoey's Extraordinary Playlist

Erin welcomes Kelly Sullivan to the show today to talk about what art can bring to life amidst chronic illness and other challenges. Kelly is a proud mother of 4 boys, Early childhood educator for 18+ years (now retired) and, she says, receiver of Chronic Illness 2 years ago ( Myalgic Encephalomyelitis/ M.E.). She says that she is plugging along on this journey called life! Kelly loves the outdoors, learning new things, and watching the wonder in a child's eye as they discover the world around them. Kelly suffers from Myalgic encephalomyelitis or ME which is a chronic post viral illness. According to the ME Action website, the disease is triggered by infection in the majority of patients.  ME may be severe: 75% of those affected are unable to work and 25% are homebound or bedridden. ME is a common chronic consequence of viruses, with 10-12% of those with serious infection going on to develop the disease. Kelly reports that the illness is becoming increasingly more common for people who have contracted COVID - a group described by some as “long-haulers.” Please see the ME Action Website for more information and opportunities to get involved: https://www.meaction.net/about/?fbclid=IwAR1nHn6lsrNOL-C_FT3yamwqwnbxjJ7LZXnp5t0IbstJsIVviy5XVxvKB7Q * * * If you enjoyed the show, please take a minute to subscribe, rate and review! --- Send in a voice message: https://podcasters.spotify.com/pod/show/thankyouformakingthat/message Support this podcast: https://podcasters.spotify.com/pod/show/thankyouformakingthat/support

Today's Episode is brought to you by https://www.painoutsidethebox.com/path-to-pain-freeRebecca Tolin brings her wild story to the podcast today as she prepares for her upcoming class at the end of January.  Chronic Fatigue Syndrome, Myalgic encephalomyelitis, fibromyalgia, Epstein-barr, post-viral syndrome, adrenal exhaustion, leaky gut syndrome, interstitial cystitis, parasites, anxiety, among others, were the labels for her life for a long time.  She's going to tell the story of how and when pain began, and how she eventually got through it.Check out her website and sign up for her newsletter here: RebeccaTolin.comBecome a Patron of the Show!  You can support the show with as little as a few dollars per month - show your support and get a shoutout every single week to thousands of people across the world: https://www.patreon.com/themindandfitnesspodcastJoin the Facebook Group to participate in show topics: The Deleters of PainGive us a Like on Facebook: The Mind and Fitness PodcastIf you are interested in advertising your online service or business, email me at eddy@themindandfitnesspodcast.com 

Nicky's publicist reached out to me to interview her for the podcast. When I read the description of her book, I knew it was one I had to read. In her book, M.E., Myself & I Nicky chronicles her amazing life from the time she was 9 years old and her father transitioned in a car accident to the ups and downs of being at the pinnacles of two careers and having everything taken from her (and I mean everything). After being on top of the world as an internationally known psychic medium Nicky was basically bedridden by Myalgic encephalomyelitis or chronic fatigue syndrome for five years. Her memoir reads like a novel. But, it's more proof that truth is stranger than fiction.I immensely enjoyed my time with Nicky. From the very moment I saw her on the screen, her energy jumped out at me. It's hard to believe she still struggles with this chronic syndrome that drives many to despair and even suicide.Nicky is a born Psychic Medium coming from many generations of psychics before her. She officially started her psychic work 28 years ago. For eighteen years she was also a Major Investigation bereavement trained Detective in Essex Police. Following medical retirement in 2003 and by public demand she has achieved a very high profile in the spiritual industry as a full-time International TV Psychic Medium, Spiritual Teacher, Angel Communicator, and Writer. Her debut book M.E Myself and I: Diary of a Psychic is inspirational!Her YouTube channel is The Bedroom Guru.ℹ️ https://www.nickyalan.co.uk/Support the show (https://www.patreon.com/grief2growth)

No doubt, when an illness barges into your life unannounced and takes up residence, it can leave you feeling angry, defeated, and powerless. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest. ME/CFS may get worse after any activity, whether it’s physical or mental. Despite the fact that ME/CFS can be as disabling as multiple sclerosis, heart disease and other chronic conditions, most of the general public is unaware of the impact it has on lives. On top of that, the misinformation perpetuated for decades about “chronic fatigue syndrome” has led to patients being negatively judged by others. Sadly, this often places additional strain on people who are already struggling to cope with such a complex and debilitating condition. In this week's podcast episode, Marni will be speaking with an inspirational woman, Georgina Wasdall. Georgina is a creative young woman living in the U.K. She's a model, aspiring actress and disability advocate represented by Zebedee Management. She is living with ME/CFS along with other associated conditions for the past 11 years. Georgina believes that everything happens for a reason as she does her best to stay positive in all circumstances. She shares her story in hope, to help others living with ME/CFS and raise awareness. Finding and loving herself took awhile for Georgina that is why she shares her journey through body positivity, growing confidence, acceptance and being kind to herself. Join us as Georgina proudly shares her story through all the trials and tribulations. Learn more about Georgina Wasdall here: Instagram: @georginawasdall Manage by Zebedee Management: https://www.zebedeemanagement.co.uk/georginaw Organisations Mentioned: https://www.actionforme.org.uk/ https://www.emerge.org.au/ Be sure to subscribe to the podcast! And follow us on Instagram @dermhealth.co or visit us online at https://www.dermhealth.co/ --- Send in a voice message: https://anchor.fm/dermhealthco/message

Alex Howard shares a mini-documentary with Simon Limpus, the first employee of the Optimum Health Clinic. The story includes how Simon went from living with ME/CFS alone in a caravan at the end of his parent's garden, to doing a 2500km motorbike challenge across Siberia after making a full recovery.

Alex Howard talks to Liarne 10 weeks on from their first session and she talks about the progress she has made, and they discuss how much activity she should now be doing. Watch Liarne's first session, Understanding why the body shuts down, at https://youtu.be/cLg9ATrMvww

Alex Howard works with Luci for a second session. With Luci having made significant progress with her ME/CFS since the previous session 6 months ago, they talk about how to protect that progress, and then how to help accelerate it. Watch Luci's first mini-session at https://youtu.be/thONLD7Ygxs

Alex Howard talks to The Optimum Health Clinic Chairman David Butcher about his journey of recovery from ME/CFS and the role that being diligent and consistent played in it. Watch the Secrets to Recovery Movie with the Free Information Pack - just go to www.theoptimumhealthclinic.com and submit your request.

Alex Howard talks to Kirsty Cullen (Director of Nutrition at the Optimum Health Clinic) about core principles of the OHC approach to nutrition.

Returning to the body | Everyday Alex 059 | Feel Good Friday Alex Howard talks to Carol about her current experience on the RESET Program and the power of learning to reconnect to her body.

Mindful Monday | Everyday Alex 055 | Alex Howard offers a simple guided meditation to help relaxing more deeply into the body.

Soul-food Sunday - Everyday Alex 049 - Alex Howard talks to George about the critical role that yoga played in helping process trauma and PTSD in his recovery from ME/CFS.

When our primary symptom is fatigue, it's clear that getting deep, effective rest is a crucial part of the recovery process. When the maladaptive stress response adds too much stress to be able to relax deeply, we can intend to rest without actually achieving deep rest. The OHC approach works to calm the nervous system enough that the tired/wired process surrenders to legitimate relaxed restful states. At stage 1 we need to prioritise deep rest, in stage 2 we need more activity to calm and ground the new energy anxiety, and at stage 3 people find it easier to get deep rest when they're able to do more physical activity. 

Alex talks about people pleasing as a habit of the helper type that puts other peoples' needs before our own. Becoming aware of the pattern and its impact is the beginning of changing the behavior. If you go to great lengths to avoid conflict or get your self-worth from doing things for other people, you might find it worthwhile to explore this pattern in yourself. Understanding this pattern as a helper type with ME/CFS can help us avoid over-extending our energy in unhelpful ways. Use the sensitivity you have to sense what other people need and turn that around now on to yourself to sense what you need.

In this Facebook Live recording CEO Alex Howard discusses getting moving without pushing in ME, CFS and Fibromyalgia recovery. The Achiever subtypes particularly can get caught up in over-doing patterns, so we need a new way to approach to break old habits and cultivate new helpful habits. Setting new goals versus recognising the achiever pattern is that a healthy mindset will make our new goal feel good, the achiever pattern mindset will feel like pressure. Recognising the healthy approach to a new goal is important so that we don't end up doing something out of force or pushing through when we don't have the wellness to accomplish something.

David Tuller returns to talk about his efforts of the past year to expose the methodological and ethical problems with the PACE and Lightning trials for therapy of ME/CFS. Host: Vincent Racaniello Guest: David Tuller Subscribe (free): iTunes, Google Podcasts, RSS, email Become a patron of TWiV! Intro music is by Ronald Jenkees. Send your virology questions and comments to twiv@microbe.tv

David Tuller returns to talk about his efforts of the past year to expose the methodological and ethical problems with the PACE and Lightning trials for therapy of ME/CFS. Host: Vincent Racaniello Guest: David Tuller Subscribe (free): iTunes, Google Podcasts, RSS, email Become a patron of TWiV! Intro music is by Ronald Jenkees. Send your virology questions and comments to twiv@microbe.tv

Psychology Practitioner Marie Fleming talks about how to bring in a sense of enjoyment to your day during the recovery process, even though illness can be so challenging and uncomfortable. Being able to create a moment of enjoyment can relieve a little bit of suffering, without just trying to pretend to be happier.

OHC practitioner Marie discusses creating healthy boundaries, especially in relation to helper subtypes. Being able to say no to people or to tasks when we need to prioritise our own healing process is an important lesson in creating healthier relationships and making sure we're setting ourselves up for recovery.

What allows us to feel calm, confident, and embodied is making peace with the sense of uncertainty, making peace with not knowing what's going to happen. Alex talks about developing confidence and a sense of safety in the body versus trying to intellectualise solutions for potential challenges. Stress and worry use up energy that we need to heal - and in ME CFS and Fibromyalgia we need to remove any unnecessary energy drains in order to build up our systems.

Ignoring our wants and needs can lead our minds and bodies to continually get louder until we finally listen and pay attention to what is currently happening. Making space for and being mindful of our thoughts, feelings, emotions, and symptoms can actually calm the system down because it doesn't need to trigger the maladaptive stress response to get our attention. Becoming aware of our thoughts and symptoms is the first practice in learning how to understand our bodies and learn how to best respond next.

In this Facebook Live recording CEO Alex Howard discusses the 4 fundamentals of recovery from ME, CFS and Fibromyalgia from which to keep track of the recovery journey and build tools to move forward. 1. Do we have a baseline? (activity levels, pacing, a place from which to build) 2. Are we making progress over time? (Less crashes, more ups, quicker recoveries) 3. Protect the progress! 4. Accelerate the progress by tackling various symptoms or co-morbidities

After discussing what is possible from recovery, and exploring things that may help someone recover from ME CFS, some people have a rejection or resistance to the idea that recovery is possible. It can be devastating to get your hopes up, which is why some people choose instead not to believe in recovery from ME CFS and Fibromyalgia. Contributing to this is the stigma and misinformation about the illness to begin with, and therefor an inability to begin to understand how to solve the problem. Alex discusses the importance of realising that recovery can include everything from improving quality of life to a full remission of symptoms, and that there is still too much unknown to state that every single person can recover. The Optimum Health Clinic seeks to solve as many pieces of the ME CFS puzzle under control to ease symptoms, take the load off the body, and support the body's natural healing abilities to improve quality of life.

It can be a real challenge to commit to future plans when we're still working on our recovery from ME CFS or Fibromyalgia. Alex offers some tips about how to handle social commitments when you really don't know if you'll be well enough to attend.

In this short Facebook Live session, Alex explains the importance of making recovery the most important goal in your day to day life, especially in the early stages. If we have multiple goals or priorities it can put our health in a back seat when we should be making choices that are best for our body and recovery. Are you giving your recovery the priority it needs for it to be the thing that progresses and moves in your life?

The advice, "listen to your body" sounds like it should be easy, but it isn't quite as simple as it seems. We often get conflicting messages from our body and it can be tricky to decide which message to listen to. Alex offers advice on how to make the next best informed decision based on all the information available.

Becoming familiar with and identifying thoughts of our energy-depleting "inner critic" can be huge in helping us identify unhelpful thought patterns or beliefs that we can stop and change. Changing the tone of our inner mental chatter to one that is positive and caring can free up emotional energy and help us make better choices. Alex also offers some tips on how to handle the inner critic once you recognise it.

The mental pattern of Windows ME means we run every thought and activity through the filter of having ME. This means every situation can cause stress if we continually question what the future holds for us which can increase the constant maladaptive stress response. At stage 1 Windows ME can help us find our boundaries, but beyond that it can start to cause problems.

Mental tennis is a mental pattern that can make decision making feel impossible. In ME/CFS our nervous systems are already over-stimulated, and when it comes to deciding how to spend our energy, patients can feel stuck in a tug-of-war over how to move forward and make the "right" choice. Alex offers some tips on how to recognise and address mental tennis to get clarity on making a choice in the moment with mindfulness and checking-in in a new or different way.

Alex discusses why patients in the nutrition program can benefit from also doing the psychology work with The Optimum Health Clinic. We do not in any way promote the idea that ME/CFS or Fibromyalgia are psychological illnesses, but that chronic illness is both difficult, stressful, and at times traumatising, and that ME/CFS in particular causes over-arousal, over stimulation, and the maladaptive stress response. Our psychology work can help reduce the stress load and calm the nervous system and help take the load off of the immune system.

The recovery path can take so much discipline and organisation that we can sometimes forget that a balanced life includes play, fun, and joy. Alex talks about finding a balance between our Helper/Acheiver/Perfection types and our childlike inclinations for enjoyment. Recovering from ME/CFS and Fibromyalgia can feel like serious business, and remembering to introduce playful activities can really help on the journey to wellness.

We now know that approaching healing from ME CFS from a "pushing" motivation can make everything worse, so willpower for recovery in ME CFS and Fibromyalgia needs a new meaning. Pushing to work harder and do more will not work for recovering from these illnesses, but we may need determination in other ways to find acceptance and allow ourselves to rest and take steps to get into a healing state. Willpower on the recovery path is doing LESS, to stop doing something you want to do when what you need to do is stop and rest.

Alex explores the psychological subtypes (Anxiety, Achiever, Helper) that can play a part in remaining ill with ME CFS, and how noticing these patterns can help us put ourselves first and notice the thought behaviours that are unhelpful in our recovery. Beyond recovery from ME CFS, understanding psychological subtypes will help us to grow and evolve throughout our lives in various challenging circumstances. Psychological subtypes aren't unique to chronic illness, and the work we put into understanding our own inner critic and neurosis will help us well into healthy life.

When we start making some progress on our journey, the recovery process can feel incredibly slow and we start to wonder what exactly is possible from recovery from ME, CFS or Fibromyalgia. Alex explains that you do not need to be perfect biologically or psychologically in order to recover - and you can easily underestimate what is possible in the long term.

Alex Howard discusses deep rest in ME, CFS and Fibromyalgia recovery. The maladaptive stress response in MECFS keeps the nervous system wired, and mindful rest can help us recover the parasympathetic nervous system. Noticing our personality patterns can help us recognise when we aren't allowing for deep rest when our mind wants us to push through and overexert.

In this Facebook Live recording CEO Alex Howard discusses being methodical: taking time when starting new supplements, treatments, or movements in order to see what is helping on the road to recovery from ME, CFS and Fibromyalgia.

In this Facebook Live recording CEO Alex Howard discusses how the maladaptive stress response can keep us in a state where we are unaware of what our body really needs. Being able to relax into your exhaustion can take practice, but being able to deeply rest is necessary for healing to take place.

The Helper subtytpe in the Optimum Health Clinic model is one type of characteristic that can be looked at in terms of habits and beliefs that may contribute to becoming or staying ill with ME, CFS or Fibromyalgia. Exploring self-worth and supporting the self can be helpful tools to practice to overcome unhealthy helper patterns.

In this Facebook Live recording CEO Alex Howard discusses gratitude and comparing ourselves to others. While being able to acknowledge our loss and difficulty is an important part of being in our body, it is also an extremely useful practice to be grateful for what we do have and the things that are working here and now.

Alex Howard discusses SOFA HEROES: Because you have to be a superhero to live with ME, CFS or Fibromyalgia. The Sofa Heroes fundraising campaign will raise money for our double-blind study with the University of Surrey on the effectiveness of The Optimum Health Clinic Method for ME/CFS and Fibromyalgia in order to make the treatment available through the NHS or covered by insurance. See how you can start a Sofa Heroes campaign at https://www.theoptimumhealthclinic.com/fundraising/ Read about the proposed study at https://www.theoptimumhealthclinic.com/case-for-support/

Alex discusses the limitations of psychological approaches and miracle recovery stories from psychological therapies for ME, CFS and Fibromyalgia. Through the Optimum Health Clinic, the patient gets both psychological support to encourage healing, and also functional medicine to look at various biological systems that may be out of balance. Exploring the Lightning Process and Mickel Therapy and Reverse Therapy, EFT and more, and their places in some parts of recovery, Alex explains how they can help with parts of the puzzle, but is not the full picture for the broadest patients with ME CFS.

Alex describes the slippery slope of self-medicating or taking supplement advice from non-professionals. With personalised care from The Optimum Health Clinic, a nutritionist can help you discover exactly which supplements will be most helpful for your specific needs.

What we need when the going is challenging and difficult, is support, inspiration, and motivation - and there are few situations as challenging as living with ME/CFS and Fibromyalgia. Alex discusses various ways of cultivating inspiration with the help of practitioners or self-inspired resources. Watch The Secrets to Recovery Movie at http://www.secretstorecovery.com/movie/

On the verge of the release of the Secrets to Recovery film, Alex reflects on the process of recovery from the patients that have been interviewed, and also the process of making a film - in that these projects take teamwork and collaboration. ME/CFS can feel like a very lonely journey, but Alex encourages being aware of all the members of your team helping you on your path to recovery.

When we've invested so much hope and energy into various methods in an effort to recovered, it can be challenging to try new approaches. The Optimum Health Clinic takes a look at all various stages of recovery and can help you develop a personalised plan for sustainable health.

While filming patients for the latest Secrets to Recovery documentary, Alex is reminded of the perserverance and hope that patients and family members have on the journey to recovery. Watch the film at http://www.secretstorecovery.com/movie/

David Tuller returns to provide an update of his investigative work to expose the methodological and ethical problems with the PACE trial for ME/CFS. Host: Vincent Racaniello Guest: David Tuller Become a patron of TWiV! Links for this episode Articleby Lubet and Tuller (STAT) David's Australian trip (virology blog) Sir Simon scores own goal (virology blog) Lightning process (virology blog) Letter to Parliament (virology blog) Crowdfunding is not conflict of interest (virology blog) Open letter to Lancet 3.0 (virology blog) Mayo still champions GET (virology blog) Image Credit Intro music is by Ronald Jenkees. Send your virology questions and comments to twiv@microbe.tv

In this Facebook Live recording CEO Alex Howard discusses whether it's possible to make a full recovery from ME, CFS and Fibromyalgia including the controversy and complexity of the group of illnesses under the umbrella of ME/CFS and Fibromyalgia.

CT38 - a cure for Myalgic Encephalomyelitis? MyHealthRecord Opt out website fails Brett Lidbury talks about diagnosing Myalgic encephalomyelitis, Chronic fatigue Syndrome and Fibromyalgia. Production checked by Charles Willock, Presented and Produced by Ian Woolf Support Diffusion by making a contribution bitcoin: 1AEnJC8r9apyXb2N31P1ScYJZUhqkYWdU2 ether: 0x45d2cd591ff7865af248a09dc908aec261168395

Amy Mooney, MS, OTR/L, our guest for Episode 22, is back to continue the discussion about Myalgic Encephalomyelitis, or "ME," through the lens of an OT practitioner and as a mother of a child with this condition. On this episode, Amy talks about the distinct role of occupational therapy in working with individuals with ME, and she calls for a shift in thinking that is sure to resonate with OT practitioners and others interested in and involved with ME.

Amy Mooney, MS, OTR/L, our guest for Episode 22, is back to continue the discussion about Myalgic Encephalomyelitis, or "ME," through the lens of an OT practitioner and as a mother of a child with this condition. On this episode, Amy talks about the distinct role of occupational therapy in working with individuals with ME, and she calls for a shift in thinking that is sure to resonate with OT practitioners and others interested in and involved with ME.

A couple of weeks ago, Triple J's HACK had a discussion about Myalgic encephalomyelitis or "ME" and some of the current challenges in treating the disorder as well as some recent scientific developments in the area. Here we ask Elizabeth to explain her thoughts on the discussion and whether she believes there is a light at the end of the tunnel for patients who continue to suffer from this debilitating syndrome.

David Tuller returns to discuss his efforts to expose the methodological and ethical problems with the PACE trial for ME/CFS. Hosts: Vincent Racaniello Guest: David Tuller Become a patron of TWiV! Links for this episode All of David's ME/CFS articles at virology blog David Tuller on Twitter Through the Shadowlands by Julie Rehmeyer Intro music is by Ronald Jenkees. Send your virology questions and comments to twiv@microbe.tv

David Tuller returns to discuss the continuing saga of the UK's PACE trial for chronic fatigue syndrome, including the accusation that he is engaging in libelous blogging. Host: Vincent Racaniello Guest: David Tuller   Become a patron of TWiV! Links for this episode TWiV 397: Trial by Error All articles by David Tuller at virology blog Getting it wrong on chronic fatigue syndrome (NY Times) Esther Crawley slide (Twitter) David's fundraising page Intro music is by Ronald Jenkees. Send your virology questions and comments to twiv@microbe.tv

Host: Vincent Racaniello Guest: David Tuller Vincent speaks with David Tuller about flaws in the U.K's $8 million PACE trial for chronic fatigue syndrome, and efforts to have the trial data released.   Become a patron of TWiV! Links for this episode Science and journalism (TWiV 111) Chronic fatigue syndrome and the CDC (virology blog) PACE trial (Lancet) Trial by error part one, two, three (virology blog) PACE economics analysis (PLoS One) All articles by David Tuller at virology blog Valerie Eliot Smith's blog Karina Hansen, prisioner of Denmark This episode is sponsored by CuriosityStream. Get two months free when you sign up at curiositystream.com/microbe and use the promo code MICROBE. Send your virology questions and comments to twiv@microbe.tv

  May 12th, is Internatioanl Awareness Day for Immunological and Neurological Disease and International Nurses Day. This day seeks to create awareness about myalgic encephalomylitis (ME), fibromyalgia, chronic fatigue syndrome, Gulfwar Syndrome and multiple chemical sensitivity. On today's show we are focusing on ME and fibromylagia   Fibromyalgia is an increasingly common condition that affecting young to middle aged people with women being more commonly diagnosed with it. It has been estimated to affect around 2-5% of the the population in developed countries. ME affect between 0.2-0.7% of people and just like fibromyalgia it can be devestaing condition affecting sleep, concentration, energy levels and produce flu like symptoms amongst others, limiting people ability to work and perform normal daily activities.   Unfortunately diagnosis can be difficult to determine and it can be difficult to get the correct advice. Join Jason Prior and Sasha Nimmo as they discuss these conditions and what can be done to managed them better.   For more information https://meaustralia.net/  

Hosts: Vincent Racaniello, Dickson Despommier, Alan Dove, and Kathy Spindler The TWiVonauts review how the weather affects West Nile virus disease in the US, benefit of B cell depletion for ME/CFS patients, and an autoimmune reaction induced by influenza virus vaccine that leads to narcolepsy. Links for this episode Virology faculty position, University of Toledo Weather and West Nile virus disease (AJTMH) B cell depletion benefits ME/CFS patients (PLoS One) Antibodies to influenza nucleoprotein cause narcolepsy (Science Transl Med) Letters read on TWiV 345 This episode is sponsored by ASM GAP - turn your science into a company Weekly Science Picks Dickson - Algal DMS releasing enzymeAlan - Science of beer agingKathy - The Art of Science winnersVincent - The future of Lego plastics Listener Pick of the Week Eric - Economics in One Lesson by Henry HazzilitStephen - The Martian by Andy Weir (audiobook) Send your virology questions and comments (email or mp3 file) to twiv@twiv.tv

True stories told live across London. Ian got up at our open mic in Hackney and told this story of strength - living with ME and a gradual and remarkable recovery. From November 2013, when the night's theme was Strength. Thanks to Dave Pickering for hosting the night and Matt Hill at rethinkdaily.co.uk for recording the stories. See acast.com/privacy for privacy and opt-out information.

Hosts: Vincent Racaniello and W. Ian Lipkin Vincent and Ian review a multicenter blinded analysis which finds no association between chronic fatigue syndrome/myalgic encephalomyelitis and XMRV or polytropic murine leukemia virus. Subscribe to TWiV (free) in iTunes, at the Zune Marketplace, by the RSS feed, by email, or listen on your mobile device with the Microbeworld app. Links for this episode: Multicenter blinded analysis of CFS and XMRV/pMLV (mBio) Press release on multicenter study (pdf) Press conference webcast TWiV on Facebook Send your virology questions and comments (email or mp3 file) to twiv@twiv.tv, or call them in to 908-312-0760. You can also post articles that you would like us to discuss at microbeworld.org and tag them with twiv.