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Link where people can sign and share this petition for Line in Denmark, who is being threatened with involuntary psychiatric hospitalization if she ...

by Tom Kindlon@disabled.social

Link where people can sign and share this petition for Line in Denmark, who is being threatened with involuntary psychiatric hospitalization if she doesn’t push through her very severe ME.

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Here's the latest News in Brief (January 13 - 19) from the Science for ME forum, a summary of Long Covid and ME/CFS news:

by ahimsa@disabled.social
Science for ME: Where science and the ME/CFS community meet.

Here's the latest News in Brief (January 13 - 19) from the Science for ME forum, a summary of Long Covid and ME/CFS news:

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New blog post today by David Tuller:

by Tom Kindlon@disabled.social
#ThereForME When bad science becomes orthodoxy Reflections from a decade of debunking the PACE trial Emma Gore-Lloyd and Karen Hargrave Jan 21, 2025 Today’s guest post is from David Tuller. David Tuller, DrPH, is a senior fellow in public health and journalism at the University of California, Berkeley. Since 2015, his Trial by Error project has investigated scientific, methodological and ethical problems with research in the field of ME/CFS and, more recently, Long Covid. His position at Berkeley is supported by crowdfunded donations to the university, largely from patients and advocates.

New blog post today by David Tuller:

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Part of the ad package we have with the Irish Medical Times for our upcoming GP webinar

by Irish ME/CFS Association@mastodon.ie
Photo of Dr Ros Vallings with the following text: GP Educational Webinar on PVFS and ME/CFS By brendan 20th January 2025 Irish ME/CFS Association. Dr Ros Vallings, a New Zealand GP who is an expert on ME/CFS, will present a free talk “Key Messages for Primary Care on the Diagnosis and Management of Post Viral Fatigue Syndrome and ME/Chronic Fatigue Syndrome” followed by a Q&A session on Tuesday, April 8 7:30 PM for just over one hour. Accreditation applied for from ICGP. For more info, contact CPD@irishmecfs.org

Part of the ad package we have with the Irish Medical Times for our upcoming GP webinar. It will also appear in the March edition and in upcoming IMT newsletters.

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New research from the US:

by Tom Kindlon@disabled.social
Screenshot of abstract

New research from the US:

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[Microblog] From ME Association

by Tom Kindlon@disabled.social

From ME Association

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[Microblog] From ME Association

by Tom Kindlon@disabled.social

From ME Association

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Person in Switzerland (on Reddit):

by Tom Kindlon@disabled.social
The rise of ME/CFS in longcovid according to my neurologist. Personal Story I just came back from my neurologist. I asked him about the study published last week which found a 4.5% prevalence of ME/CFS in people who had Covid. He said before the pandemic, his whole team of 3 people, who deal with the ME/CFS cases here, treated 10 patients PER YEAR. Now, after Covid19, he alone sees 5 patients PER WEEK to determine and/or treat patients for ME/CFS. And that is just in my small town university hospital. I thought that 4.5% number was crazy high, but its consistent with the experience of the medical professionals here... Anyway, I just wanted to raise some awareness. If you or anyone you know has longcovid and experience PEM, take it seriously! Don't try to be a tough guy and power through it. You can make it worse! I know I did.

Person in Switzerland (on Reddit):

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Discriminating ME/CFS and other medical problems using data from the UK Biobank

by Tom Kindlon@disabled.social

Discriminating ME/CFS and other medical problems using data from the UK Biobank

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From ME Research UK:

by Tom Kindlon@disabled.social
"Strikingly, 90% of these post-COVID-19 ME/CFS cases clustered with the most symptomatic and severe cases of Long COVID, highlighting the overlap between these two conditions. This finding reinforces what we at BHC have long known: ME/CFS is not only a real and diagnosable condition, but it is also a disabling disease that demands attention, especially in the wake of a global pandemic." - Suzanne D. Vernon, PhD Bateman Horne Centre

From ME Research UK:

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[Microblog] From ME Research UK

by Tom Kindlon@disabled.social
Photo of an MRI scanner

From ME Research UK

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The next meeting of the Bray ME/CFS adult support group is on Friday, January 31

by Irish ME/CFS Association@mastodon.ie
Bray ME/CFS adult support group

The next meeting of the Bray ME/CFS adult support group is on Friday, January 31.

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When PACE-Gate Meets Sample Size Calculations - Nuno Sepulveda

by Tom Kindlon@disabled.social
New Frontiers in Statistics and Data Science When PACE-Gate Meets Sample Size Calculations - Nuno Sepulveda The author notes multiple statistical issues in the PACE trial such as not accounting for multiple pairwise comparisons and inconsistencies between the theoretical assumptions underpinning the sample size calculations and the prior beliefs of the trial’s research team.

When PACE-Gate Meets Sample Size Calculations - Nuno Sepulveda

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[Microblog] From Australia:

by Tom Kindlon@disabled.social

From Australia:

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The Swedish Covid Association has filed a complaint against the National Board of Health and Welfare for ignoring the voices of patients

by Tom Kindlon@disabled.social
The Swedish Covid Association has filed a complaint against the National Board of Health and Welfare for ignoring the voices of patients. A disappointed journalist Agnis Arpi from Altinget draws parallels with the treatment of ME patients and had hoped things could have turned out better for Long Covid patients.

The Swedish Covid Association has filed a complaint against the National Board of Health and Welfare for ignoring the voices of patients.

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The European ME Coalition (EMEC) gave an update on the Horizon Europe call on high-burden, under-researched conditions

by Tom Kindlon@disabled.social
Europe The European ME Coalition (EMEC) gave an update on the Horizon Europe call on high-burden, under-researched conditions. Three funded projects have been announced and focus on endometriosis, familial hypercholesterolemia, and difficult-to-treat rheumatoid arthritis. EMEC was involved in a major consortium that included ME/CFS experts across Europe but failed to obtain funding.

The European ME Coalition (EMEC) gave an update on the Horizon Europe call on high-burden, under-researched conditions

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A Swedish newspaper discusses ME sufferer Teresia Kindstrand whose benefits are so low they don't cover necessities as food & medicines

by Tom Kindlon@disabled.social

A Swedish newspaper discusses ME sufferer Teresia Kindstrand whose benefits are so low they don't cover necessities as food & medicines.She also explains food costs are even higher for those who are too sick to do the shopping themselves.

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“Living within the constraints of moderate ME is a gruelling grind, the last thing I needed to do – or any of us needs to do – is begin comparing our ...

by Tom Kindlon@disabled.social

“Living within the constraints of moderate ME is a gruelling grind, the last thing I needed to do – or any of us needs to do – is begin comparing our lives and our achievements to others.”

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🧵 We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"

by Tom Kindlon@disabled.social
We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride Posted by Sam Pearce – November 5, 2024 Photo of Mlindeni Gabela and Sam Pearce wearing SICK T-shirts to promote Sick Pride. This and all other SICK Pride event photos were provided by Sam Pearce.

🧵We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"

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GP Educational Webinar on PVFS and ME/CFS

by Irish ME/CFS Association@mastodon.ie

GP Educational Webinar on #PVFS and ME/CFS

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[Microblog] @ mecfs mastodon

by Voline@kolektiva.social

@mecfs mastodon.social/@violetblue/11

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“A day in the life of a pwME : My daily routine as a person with moderate/severe ME/CFS”

by Tom Kindlon@disabled.social

“A day in the life of a #pwME : My daily routine as a person with moderate/severe ME/CFS”

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[Microblog] This is in the US

by Tom Kindlon@disabled.social

This is in the US. It would be great if it was available in other countries too as means testing of payments mean many people with chronic illnesses and disabilities really struggle financially.

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"Vulnerable Americans live in the shadow of COVID-19 as most move on"

by ahimsa@disabled.social

"Vulnerable Americans live in the shadow of COVID-19 as most move on"

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Well done to Mark Vink on getting another piece published: this one has the provocative title, "CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseas…

by Tom Kindlon@disabled.social

Well done to Mark Vink on getting another piece published: this one has the provocative title, "CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that"

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New review from Australian researchers

by Tom Kindlon@disabled.social
Abstract Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex and multifaceted disorder that defies simplistic characterisation. Traditional approaches to diagnosing and treating ME/CFS have often fallen short due to the condition’s heterogeneity and the lack of validated biomarkers. The growing field of precision medicine offers a promising approach which focuses on the genetic and molecular underpinnings of individual patients. In this review, we explore how machine learning and multi-omics (genomics, transcriptomics, proteomics, and metabolomics) can transform precision medicine in ME/CFS research and healthcare. We provide an overview on machine learning concepts for analysing large-scale biological data, highlight key advancements in multi-omics biomarker discovery, data quality and integration strategies, while reflecting on ME/CFS case study examples. We also highlight several priorities, including the critical need for applying robust computational tools and collaborative data-sharing initiatives in the endeavour to unravel the biological intricacies of ME/CFS.

New review from Australian researchers

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"2024 in Research: Failure to Respond" (13 January 2025)

by Tom Kindlon@disabled.social

"2024 in Research: Failure to Respond" (13 January 2025)

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[Microblog] New from Australia:

by Tom Kindlon@disabled.social
Screenshot of abstract

New from Australia:

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[Microblog] ME Research UK:

by Tom Kindlon@disabled.social
"Our findings add to the growing realisation that persons with ME/CFS are compromised cognitively, they are reacting slower, attention is variable over time, and cognitive efficiency supporting executive function, learning and memory is significantly decreased to a clinically meaningful degree." ME INFORM. INFLUENCE. INVEST. SC036942 Lange et al. (2024) Frontiers in Neuroscience RESEARCH UK

ME Research UK:

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[Microblog] ME Research UK

by Tom Kindlon@disabled.social
T CELL EXHAUSTION IN ME/CFS T cells help the immune system to fight infections through destroying threats like viruses and infected cells. There is growing evidence that, in ME/CFS, T cell exhaustion (often referred to as immune exhaustion) is occurring - a state where T cells are chronically stimulated and become so overworked that they eventually stop functioning properly. Researchers at Cornell University suggest that ME/CFS leaves "epigenetic scars” on T cells, making them more likely to enter a state of T cell exhaustion. Essentially, T cells are rewired at a genetic level to become exhausted. + T CELL (immune cell) genetic changes lu, D.S. et al. (2024) 'Transcriptional reprogramming primes CD8+ T cells toward exhaustion in Myalgic encephalomyelitis/chronic fatigue syndrome' ME RESEARCH UK SC036942 T CELL EXHAUSTION (dysfunctional immune system) INFORM. INFLUENCE. INVEST

ME Research UK

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"COVID-19 Triggers ME/CFS" by Suzanne D

by ahimsa@disabled.social
The RECOVER study, which has collected data from more than 15,000 adult participants over the past four years, provided us with an unprecedented opportunity to determine whether ME/CFS occurred after being sick with COVID-19 and the overlap between ME/CFS and Long COVID. In a paper published today in the Journal of General Internal Medicine, we found that among participants infected with SARS-CoV-2, the incidence of ME/CFS—defined using the Institute of Medicine (IOM) diagnostic criteria—was 15 times higher than pre-pandemic rates. Of the 4,515 participants who enrolled within 30 days of contracting COVID-19, 73 developed ME/CFS at least six months post-infection. In total, 531 participants met ME/CFS criteria, translating to a prevalence of 4.5% among those infected—nearly eight times higher than uninfected participants. This prevalence is five times higher than pre-pandemic estimates and underscores the severe and lasting impact of COVID-19 on public health.

"COVID-19 Triggers ME/CFS"by Suzanne D. Vernon

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Tetrahydrobiopterin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Friend or Foe?

by Tom Kindlon@disabled.social
Biomolecules Tetrahydrobiopterin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Friend or Foe? — Rahman et al. "Based on our recent findings, we observed that tetrahydrobiopterin (BH4) metabolism was highly dysregulated in ME+OI patients. In the current review article, we attempted to summarize our recent findings on BH4 metabolism to shed light on the molecular mechanisms of OI."

Tetrahydrobiopterin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Friend or Foe?

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"This is not about not trying hard enough"

by Tom Kindlon@disabled.social
#ThereForME "This is not about not trying hard enough" For over ten years Karen Galpin has cared for her daughter Sophia who suffers from very severe ME. In this post she provides an honest description of a brutal reality and of much courage: "Sophia is trying so hard every minute of every hour, just to get through that day and night to live again the next day. The mental fortitude and resilience required to live with this destructive disease in the face of so much suffering is both remarkable and truly admirable. The idea that she isn’t trying hard enough couldn’t be further from the truth. The prevailing narrative around ME is both harmful and at complete odds with the reality of living with this devastating and life-changing condition."

"This is not about not trying hard enough"

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The ME Association: Chairman’s Statement for 2024

by Tom Kindlon@disabled.social
UK MEA The ME Association Chairman’s Statement for 2024 Reports on recent MEA expansion including a relaunch of the ME Connect advisory service, increased social media staff and activity, a summary of research funded, a project working with some Integrated Care Boards on improving local NHS ME/CFS services, and hints about plans for spending the MEA's large reserves. On governance: "We are committed to undertaking a comprehensive review of our current Articles. That review will look at the Code, the Charity Commission’s Model Articles and any other source of good practice. To this end we shall consult widely and transparently including recruiting an independent charity governance professional to advise the charity."

The ME Association: Chairman’s Statement for 2024

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Severe ME/CFS: Care, Rights, and Research Webinar Series — Research (Pt

by Tom Kindlon@disabled.social

Severe ME/CFS: Care, Rights, and Research Webinar Series — Research (Pt. 4 of 4)

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The Long Covid Clinical Podcast, episode 6: Dr

by Tom Kindlon@disabled.social

The Long Covid Clinical Podcast, episode 6: Dr. Hector Bonilla, director of the ME/CFS Clinic and co-director of the Long Covid Clinic at Stanford, "discusses the similarities and differences between Long COVID and [ME/CFS]."

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Swedish ME Association RME chairperson Jenny Lundgren has written an opinion piece for Altinget about severe consequences from the lack of care of ME ...

by Tom Kindlon@disabled.social

Swedish ME Association RME chairperson Jenny Lundgren has written an opinion piece for Altinget about severe consequences from the lack of care of ME patients.She asks for a national center of knowledge, specialist care, more research,more education & a patient register for ME

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German Medscape had an article on ME/CFS titled:"ME/CFS: Why are there still no evidence-based therapies?

by Tom Kindlon@disabled.social

German Medscape had an article on ME/CFS titled:"ME/CFS: Why are there still no evidence-based therapies? Scientists struggle for research funding." It includes interviews with Prof Scheibenbogen & Prof Wirth

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New short overview piece with links "What is myalgic encephalomyelitis?

by Tom Kindlon@disabled.social
What is myalgic encephalomyelitis? from LONG COVID ESSENTIALS a resources series by The Sick Times x Long COVID Justice Myalgic encephalomyelitis Myalgic encephalomyelitis (ME)*, is an umbrella term for a debilitating, multi-systemic disease often triggered by an infection. It can range in severity from mild to very severe and cause people to be home-bound or fully bed-bound. The disease is life-changing, even when mild.

New short overview piece with links"What is myalgic encephalomyelitis?"

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"Support Group Recap: When People and Life Don’t Cooperate: Coping with Things Not Going the Way We Want Them to Go"

by Tom Kindlon@disabled.social
Bateman Horne Center logo Support Group Recap: When People and Life Don’t Cooperate: Coping with Things Not Going the Way We Want Them to Go October 15, 2024

"Support Group Recap: When People and Life Don’t Cooperate: Coping with Things Not Going the Way We Want Them to Go"

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Extract from "Frailty and Fleeting Independence", a blog post where a woman with ME, who is a published writer, describes the onset of the new ...

by Tom Kindlon@disabled.social
This horrendous ordeal was a sharp reminder as to how little independence I actually had with ME in my life and how fragile that independence had become. Most ME patients will agree with me when I say living with ME is like living with a constant threat over your head… Do too much and you will crash, crash and you may not recover, or will partially recover and end up with a further reduced baseline. In that moment, I had the sudden realisation my independence was akin to a wave on a seashore. It was something which could be whipped from me at any moment and without any unicorns or rainbow endings in sight, my fight continued… ---

Extract from "Frailty and Fleeting Independence", a blog post where a woman with ME, who is a published writer, describes the onset of the new symptom when out shopping.

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A woman with ME, who is a published writer, describes applying for a disability payment in Ireland

by Tom Kindlon@disabled.social
Bizarrely bonkers bureaucracy While the poems continued, my medical path remained potholed, and with no return to the workplace anywhere in sight, my husband and I had to once again sit down with our finances. We were living off his wage and my illness benefit, – a benefit set to run out the following year, 2014 – aware of this, we had to suck up any unconscious bias we had towards the word disability, as we pulled out the many forms required to apply for disability allowance, hoping it would be granted. Anyone in Ireland who has had the wonderfully sadistic pleasure of engaging with this benefit will know it’s not an easy payment to receive. Firstly, there are many, many forms.

A woman with ME, who is a published writer, describes applying for a disability payment in Ireland.

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Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation inLongCovid :

by Tom Kindlon@disabled.social
Table 4. Symptoms made worse due to physical or cognitive exertion (N = 1534). % (n) "Yes" % (n) at "2" Threshold 99.4 (1525) 98.0 (1504) 98.9 (1517) 98.3 (1508) Items 1. Reduced stamina and/or functional capacity 2. Physical fatigue 3. Cognitive exhaustion 4. Problems thinking 5. Unrefreshing sleep 6. Muscle pain 7. Insomnia 8. Muscle weakness/instability 9. Temperature dysregulation 10. Flu-like symptoms 11. Aches all over your body 12. Physically fatigued while mentally wired 13. Dizziness 14. Gastro-intestinal problems 15. Headaches 16. Ataxia 17. Increased heart rate/heart palpitations 18. Weak or stiff neck 19. Joint pain 20. Problems with speech 21. Sore throats 22. Muscle twitching 23. Night sweats and chills 24. Sore eyes 25. Nerve pain 26. Sore lymph nodes 27. Nausea 28. Tinnitus 29. Trouble breathing 30. Neurological symptoms 31. Excessive sleep 32. Loss of appetite 33. Migraines 34. Cardiac pain and/or arrhythmia 35. Brain twangs 36. Severe burning sensation all over skin 37. Paralysis/inability to move 38. Premenstrual symptoms 39. Decreased heart rate

Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation in#LongCovid:

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[Microblog] New from Germany:

by Tom Kindlon@disabled.social
Graphical abstract

New from Germany:

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(6-minute video) Life with a Low Battery: Living with ME/CFS

by Tom Kindlon@disabled.social
Screenshot from the video with the following text: Life with a Low Battery: Living with ME/CFS Full Sensory Video all colour & music Join Mito, the newest member of the Bateman Horne Center, as she takes you on a journey to understand Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using an analogy we can all relate to: your cell phone's battery. Mito explains how our bodies, like phones, require energy to run the "apps" of daily life. For individuals with ME/CFS, this energy is drastically limited, leading to a debilitating and often misunderstood condition.

(6-minute video)Life with a Low Battery: Living with ME/CFS

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[Microblog] (New York City)

by Tom Kindlon@disabled.social
Photo of an American flag outside a building of some sort With the following text: Center for Enervating NeuroImmune Disease We are seeking volunteers comprising 40 ME/CFS patients and 20 controls to participate in this NIH funded (U54AI178855) project. The ME/CFS subjects will be identified by expert physician Dr. Susan Levine, M.D. (Manhattan, NY). Only those participants whose onset of ME/CFS was before 2020 will be eligible. Please review our recruitment flyer for more information on how to volunteer as a patient or control in this research study. Read more here>>

(New York City)

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We'd love if you could nominate us movementforgood

by Irish ME/CFS Association@mastodon.ie
One of the Irish ME/CFS Association logos Help us win £1000. Please nominate us today. Movement for Good logo Benefact Group logo

We'd love if you could nominate us movementforgood.com/index.php?

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‘I am running eight marathons for my best friend Freddie and for two charities*

by Tom Kindlon@disabled.social

‘I am running eight marathons for my best friend Freddie and for two charities*. This is why.’

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[Microblog] ME Research UK:

by Tom Kindlon@disabled.social
() ME/CFS and Quality of life What is quality of life? Quality of life is the degree to which an individual is healthy, comfortable, able to complete the tasks of daily living, and to enjoy life. — Researchers based at Cardiff University - alongside people with lived experience of ME/CFS, conducted a study to explore how ME/CFS impacts quality of life. Results suggested: && • ME/CFS had a negative impact on quality of life for both those with the disease, and for their family members. • For many people with ME/CFS, the disease had resulted in isolation and lack of support. Muirhead et. al., Medicina, 2024., and Vyas et.al., Neurology 2022. ME RESEARCH UK INFORM. INFLUENCE. INVEST. SC036942

ME Research UK:

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[Microblog] ME Research UK:

by Tom Kindlon@disabled.social

ME Research UK:

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Saturday, January 18

by Irish ME/CFS Association@mastodon.ie
One hand on top of another in a comforting gesture Text: #MEaction ME caregivers support call https://www.meaction.net/act-events/

Saturday, January 18

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In case you missed it:

by ahimsa@disabled.social

In case you missed it:

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From Bateman Horne Center:

by ahimsa@disabled.social

From Bateman Horne Center:

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Here's the latest News in Brief (Dec

by ahimsa@disabled.social
Science for ME: Where science and the ME/CFS community meet.

Here's the latest News in Brief (Dec. 30 - Jan . 5) from the Science for ME forum, a summary of Long Covid and ME/CFS news:

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"The medical breakthroughs to watch out for in 2025" inews

by Tom Kindlon@disabled.social
Various medical images with text saying: BIG READ The medical breakthroughs to watch out for in 2025 New Alzheimer's disease drugs, a world-first skin cancer vaccine, and personalised health apps that change the way we track our diets are just some of the medical breakthroughs on the horizon It is hoped a raft of new medical breakthroughs could occur next year

"The medical breakthroughs to watch out for in 2025"inews.co.uk/news/health/medica

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Exploring the shared mechanism of fatigue between systemic lupus erythematosus and myalgic encephalomyelitis/chronic fatigue syndrome: monocytic dysregulation and drug repurposing

by Tom Kindlon@disabled.social
Screenshot of abstract

New:

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Relationship between major depressive disorder & myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysis

by Tom Kindlon@disabled.social
Abstract Major depressive disorder (MDD) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) frequently occur together; yet their causal relationship remains unclear. To investigate the potential genetic causal link between these conditions, we conducted a two-sample Mendelian randomization (MR) analysis. Summary data from Genome-Wide Association Studies (GWAS) for MDD were sourced from the UK Biobank and the Psychiatric Genomics Consortium, while GWAS data for ME/CFS were retrieved from the UK Biobank. Inverse-variance weighting (IVW), the MR-Egger method, and weighted median, simple and weighted modes were used to perform the MR analysis. In addition, Cochrane’s Q-test was used to detect heterogeneity among the MR results. Horizontal pleiotropy was detected using the MR-Egger intercept and the MR pleiotropy residual sum and outlier (MR-PRESSO) tests. Leave-one-out analysis was performed to investigate the sensitivity of the association between MDD and ME/CFS. The results of the MR analysis revealed no causal relationship between MDD and ME/CFS. The pleiotropy test revealed that causality bias was improbable, and no evidence of heterogeneity was found among the genetic variants. Finally, the leave-one-out test confirmed the stability and robustness of our findings.

Relationship between major depressive disorder & myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysis

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[Microblog] New UK research:

by Tom Kindlon@disabled.social
Screenshot of abstract

New UK research:

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English translation of Russian thesis: "Comparison Of Clinical & Pathophysiological Characteristics Of ME/CFS & Chronic Fatigue Associated With Post-Covid-19 Syndrome"

by Tom Kindlon@disabled.social
Comparison Of Clinical And Pathophysiological Characteristics Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome And Chronic Fatigue Associated With Post-Covid-19 Syndrome — Riabkova, Varvara Aleksandrovna "Microcirculatory dysfunction in patients with chronic fatigue associated with PCS is characterized by a specific feature – reduced signal in laser doppler flowmetry during arterial occlusion compared to healthy controls, which may indicate microcirculatory stasis. In contrast, microcirculatory disturbances in ME/CFS patients correspond to the classic picture of endothelial dysfunction, which manifests as a decrease in peak flow during post-occlusive reactive hyperemia response."

English translation of Russian thesis:"Comparison Of Clinical & Pathophysiological Characteristics Of ME/CFS & Chronic Fatigue Associated With Post-Covid-19 Syndrome"

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Trial By Error: Video of October Talk in Ireland on How “Biopsychosocial” Research on ME, Long Covid, and Related Illnesses Harms Patients 6 January 2025 By David Tuller, DrPH

by Tom Kindlon@disabled.social

Trial By Error: Video of October Talk in Ireland on How “Biopsychosocial” Research on ME, Long Covid, and Related Illnesses Harms Patients6 January 2025 By David Tuller, DrPH

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(Northern Ireland) "Local Charity Explores Parallels Between M

by Tom Kindlon@disabled.social
Local Charity Explores Parallels Between M.E. And Long Covid With Leading Experts At Newry Event Tina Calder January 6, 2025 Photo of Dr. William Weir & Prof. Tom Trinick OBE Hope 4 ME & Fibro Northern Ireland recently hosted an evening that highlighted the devastating effects of post-viral illness, through an exploration of the striking similarities between Myalgic Encephalomyelitis (M.E.) and one group of Long Covid patients diagnosed with Covid-induced M.E..

(Northern Ireland)"Local Charity Explores Parallels Between M.E. And Long Covid With Leading Experts At Newry Event"

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Another old awareness image I came across when clearing out some material

by Tom Kindlon@disabled.social
Do You Suffer From M.E?HeadachesMusclePainVMentalFogDigestive ProblemsNoise SensitivityPoor Short-term MemoryDizzinessTenderLymph NodesAlcoholIntolerancePoor Circulation & Temperature ControlAll these are symptoms of Myalgic Enchephalomylistis If you have suffered from one (or usually more than one) of these symptoms for more than a few weeks then you could have M.E.ExtremeMental &Physical Fatigue After MinorExerciseFor further help and advice please write to:M.E. Support Leicestershire, 51 Roseway, Leicester. LE4 7GX or Email:MESupportLeics@aol.comPublished by: M.E. Support LeicestershirePresident: Dr Layinka M. Swinburne, Consultant Immunopathologist, B.Sc., MB.Ch.B., FRCP., FRC Path, DCH.

Another old awareness image I came across when clearing out some material

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Petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" chng

by Tom Kindlon@disabled.social
Science for ME petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review Update: On Cochrane's excuses for scrapping the replacement review process they set up: Part 1 This part examines the first excuse given by Cochrane, a lack of resources to oversee the review, pointing out it was Cochrane that made the process overcomplicated, and much of the work has been done. "Do personal allegiances outweigh a commitment to good science? An alternative no-cost solution would have been to withdraw the Larun review - there are good grounds to do so. Why is Cochrane so determined to maintain the Larun et al review, in the face of such substantial costs to people with ME/CFS and to itself?"

Petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review"chng.it/zTZ7vX9Czd

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"The Red Tree & ME" including 23 responses she received from scientists, researchers, clinicians and advocates involved with ME, Long Covid, & similar

by Tom Kindlon@disabled.social
The Red Tree and M.E. In this blog Dr. Jo Greer, who is an educational psychologist and carer for a daughter with severe ME, tells of how the book "The Red Tree" by Shaun Tan has helped and provided support though a red leaf as a symbol of hope. She has asked scientists, researchers, clinicians and advocates involved with ME, Long Covid and other Infection Associated Chronic Condition to share a 'red leaf' and got 23 lovely responses. She writes: "My best hope is that these heartwarming messages about scientific progress and collaborative endeavour encourage you at some level, whatever (and maybe even despite) your circumstances, especially as we enter a new year." Article 1 'The Red Tree and M.E. - One leaf at a time Article 2 'We shall have spring again' - Messages of hope and solidarity for 2025

"The Red Tree & ME" including 23 responses she received from scientists, researchers, clinicians and advocates involved with ME, Long Covid, & similar

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Long COVID and the Rise of Digital Patient Activism

by Tom Kindlon@disabled.social
Research Article January 01 2025 Emily Mendenhall Long COVID and the Rise of Digital Patient Activism https://doi.org/10.1525/curh.2025.124.858.9 HIV patient activism has had a profound influence on the embodied health movements that followed it. Complex chronic conditions—for which there is no verifiable test or clear treatment program—have been called “illnesses you have to fight to get,” in part because patients struggle to convince doctors to take their pain seriously enough to give a diagnosis. This essay puts Long COVID into context with other embodied health movements, highlighting how Long COVID activism built upon previous social movements, and how digital networking and viral social media messaging set it apart.

Long COVID and the Rise of Digital Patient Activism

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Bateman Horne Center has a list of Healthcare Professional Continuing Medical Education (CME) courses on their website you can share with your doctor ...

by Tom Kindlon@disabled.social

Bateman Horne Center has a list of Healthcare Professional Continuing Medical Education (CME) courses on their website you can share with your doctor if they want to learn more about ME/CFS. Two of the courses are expiring soon (end of January).

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Science for ME update:

by Tom Kindlon@disabled.social

Science for ME update:

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David J Black: Economic fallacies & public health realities

by Tom Kindlon@disabled.social
Photo of Sigmund Freud David J Black: Economic fallacies and public health realities At the heart of the biopsychosocial doctrine lies the unproven conviction that welfare reliant citizens beset by “unhelpful cognitions” should be cajoled out of a dependency mindset through the agency of Cognitive Behavioural Therapy. The leading proponent of the doctrine was psychiatrist Simon Wessely, whose contribution to the Woodstock conference had been the voicing of a fundamentally right-wing libertarian thesis that welfarism was a decadent indulgence which only encouraged the poor-sick to become spongers and ne’er do wells. Read more here>>

David J Black: Economic fallacies & public health realities

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"No suffering is equal" meglobalchronicle

by Tom Kindlon@disabled.social
Her head in her hands No suffering is equal Laura de Vries was a graduated doctor when she got ME 6 years ago. Since then, she has been an advocate for ME and Long Covid patients’ recognition and rights. She recently posted this strong appeal to her (former) colleagues on LinkedIn. It hit like a bomb and she reaped much gratitude from her fellow sufferers of today. "I wore my white coat for the last time almost 6 years ago. On my last day at work before I called in sick in June 2018, I thought at the time I was having a burnout. It later turned out to be Myalgic Encephalomyelitis (ME). And with that diagnosis, I became part of a patient group with a long history of medical trauma. A group that has had to deal with the ugliest side of the medical profession. The side of harmful treatments, psychologizing, looking away, of not being taken seriously. The side of invisible suffering, sometimes even unbearable suffering, resulting in death." Read more here>>

"No suffering is equal"meglobalchronicle.wordpress.co

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"The New Year’s Resolutions of a Chronically Ill Person" (2022)

by Tom Kindlon@disabled.social

"The New Year’s Resolutions of a Chronically Ill Person" (2022)

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“Is There Hope in a New Year?

by Tom Kindlon@disabled.social

“Is There Hope in a New Year?” (2021 but timeless)

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2024: Looking back on a year of ME/CFS research

by Tom Kindlon@disabled.social
ME/CFS Skeptic A critical view into ME/CFS research Menu 2024: looking back on a year of ME/CFS research Posted onDecember 29, 2024 As 2024 comes to a close, it is time to review the most interesting studies on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Although more than 300 scientific papers on ME/CFS have been published, only a few provide valuable data that bring us closer to understanding the illness. In this article, we focus on a couple of interesting studies that caught our attention. If you think we’re missing an important one, feel free to post it in the comment section below.

2024: Looking back on a year of ME/CFS research

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New Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome & ‘medically unex…

by Tom Kindlon@disabled.social
Screenshot of abstract

NewRe-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome & ‘medically unexplained symptoms’

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For what it is worth:

by Tom Kindlon@disabled.social
Data Insights December 31, 2024 Norketotifen by Emergo Therapeutics for Chronic Fatigue Syndrome (Myalgic Encephalomyelitis): Likelihood of Approval Brought to you by GlobalData Emergo TherapeuticsNorketotifen Share Norketotifen is under clinical development by Emergo Therapeutics and currently in Phase I for Chronic Fatigue Syndrome (Myalgic Encephalomyelitis). According to GlobalData, Phase I drugs for Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) does not have sufficient historical data to build an indication benchmark PTSR for Phase I. GlobalData uses proprietary data and analytics to create drugs-specific PTSR and LoA in the Norketotifen LoA Report. Buy the report here.

For what it is worth:

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Details of the IACFS/ME 2025 medical & scientific conference are now up on their website

by Tom Kindlon@disabled.social
Text saying "International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) 17th Medical and Scientific Conference October 22 - 25, 2025 Nova Southeastern University, Davie Campus Miami/ Fort Lauderdale, Florida USA" with a photo of the beachfront from the area

Details of the IACFS/ME 2025 medical & scientific conference are now up on their website

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New from the CDC: Voice of the patient: people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) share in their own words

by Tom Kindlon@disabled.social
Screenshot of abstract

New from the CDC:Voice of the patient: people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) share in their own words

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New Year’s Eve with # MECFS is completely out of my control

by ImmedicableME@mastodon.online

New Year’s Eve with #MECFS is completely out of my control. I could be in bed by 5 pm; I could still be awake at 5 am. There is no option to plan for being awake at midnight. I feel weirdly like I’ve found the cheat code and no longer have to do the side quest to level up. There are some good things about being sick, and being able to opt out of holiday expectations is one I’ve really come to appreciate. @mecfs

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[Microblog] ME Research UK:

by Tom Kindlon@disabled.social

ME Research UK:

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[Microblog] ME Research UK:

by Tom Kindlon@disabled.social
Blackboard with these words on it: COMMUNICATION TEAMWORK GOALS RESULTS STRATEGY RISKS TEAM COSTS PROJECT VISION TASKS PLAN ANALYSIS DEVELOPMENT EXECUTE CONTROL QUALITY PLANNING ORGANIZE

ME Research UK:

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For some people this is a choice, but many people with ME/CFS, Long Covid and other energy-limiting chronic illnesses conditions don't have much of a ...

by Tom Kindlon@disabled.social
2 images: on top, a group of people going wild at a party-type event with the text "my friends tonight". Below, somebody tucked up in bed on their own with the text "me tonight"

For some people this is a choice, but many people with ME/CFS, Long Covid and other energy-limiting chronic illnesses conditions don't have much of a choice.

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Long-COVID - pathophysiology, current concepts and future directions

by Tom Kindlon@disabled.social
Long-COVID - pathophysiology, current concepts and future directions — Chrysanthi Skevaki et al. "not all patients recover to their pre-COVID-19 functional level. 106 Especially patients who experience post-exertional malaise, a hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), should be carefully evaluated, and pacing and energy management should be recommended."

Long-COVID - pathophysiology, current concepts and future directions

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Carmen Scheibenbogen is on Der Spiegel's list of 100 people who provide hope for 2025

by Tom Kindlon@disabled.social
Carmen Scheibenbogen is on Der Spiegel's list of 100 people who provide hope for 2025. She has been an ME researcher for many years and is now also working on Long Covid. She says to Spiegel that she had never thought it possible that a disease as serious as ME could exist whilst we know so little about it. Despite having met scepticism from colleagues, she says she has a responsibility to her patients. She has initiated several treatment studies in search of a breakthrough treatment. Der Spiegel's presentation (paywalled) l Thread

Carmen Scheibenbogen is on Der Spiegel's list of 100 people who provide hope for 2025.

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Cochrane review Exercise Therapy for ME/CFS

by Tom Kindlon@disabled.social
Cochrane review Exercise Therapy for ME/CFS. Science for ME petition Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review Now has over 14,000 signatories, with over 1000 signing in the week since Cochrane announced cancellation of the new review process (see last week's news) Petition update How a review published in 2019 became a review published in 2024 "To be clear, the 2019 review has not been changed, it has not been updated. The only things that have changed about the 2019 review are the addition of that editorial note about the abandonment of the new review process... and the citation... A 2024 publication date is particularly misleading... The literature search was undertaken in 2014 and so the review contains no source material more recent than the 2011 PACE study report." Petition update | Petition thread | Review | Review thread

Cochrane review Exercise Therapy for ME/CFS

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Official responses to "Maeve Boothby O’Neill: Prevention of Future Deaths Report"

by Tom Kindlon@disabled.social
UK Courts and Tribunals Judiciary Maeve Boothby O’Neill: Prevention of Future Deaths Report, October 8, 2024 Regulation 28 report to prevent future deaths The report was sent to some medical bodies and their responses have now been published. They are from NICE, NHS England, The Department of Health and Social Care, the Medical Research Council and the Medical Schools Council. Document with links to the report and responses | Thread

Official responses to "Maeve Boothby O’Neill: Prevention of Future Deaths Report"

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Here's the latest News in Brief (December 23 - December 29) from the Science for ME forum, a summary of Long Covid and ME/CFS news:

by ahimsa@disabled.social
Science for ME: Where science and the ME/CFS community meet.

Here's the latest News in Brief (December 23 - December 29) from the Science for ME forum, a summary of Long Covid and ME/CFS news:

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A big thank you to everyone who did anything, big or small, for the # MyalgicEncephalomyelitis / # ChronicFatigueSyndrome (+/or # LongCovid ) ...

by Tom Kindlon@disabled.social
Image showing "thank you" in lots of different languages

A big thank you to everyone who did anything, big or small, for the #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (+/or #LongCovid) cause in 2024 (including simply sharing messages on social media). 👍👏

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End of year research summary from "ME/CFS Skeptic: A critical view into ME/CFS research"

by ahimsa@disabled.social

End of year research summary from "ME/CFS Skeptic: A critical view into ME/CFS research"

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“Cochrane Continues Telling ME/CFS Patients to Go F-k Themselves” by David Tuller DrPH

by Tom Kindlon@disabled.social

“Cochrane Continues Telling ME/CFS Patients to Go F-k Themselves”by David Tuller DrPH

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Just clearing out some stuff and found this 20-year-old poster

by Tom Kindlon@disabled.social
"I thought I had lost my sister..." M.E. affects 25,000 young people. Naomi Beth Naomi has M.E. but both sisters are affected by the illness My sister Naomi has had M.E. for eight years, since she was 12 years old. At her worst she was so ill that she was completely paralysed, in a lot of pain, and couldn't speak or open her eyes. Our family life was changed beyond recognition. I couldn't bear to see her this way. I missed her so much and was scared that she'd never get better. Recently Naomi has improved a lot and can enjoy short trips out in her wheelchair. We can laugh and have fun together again. I feel I've got my sister back. Life is still hard, I feel sad that she misses out on so much and guilty that I can enjoy things she can't. Being part of AYME has made us feel less alone. Beth M.E. can strike at any age, to any person from all walks of life. Members of the Association of Youth with M.E. cheerfully support and encourage young people affected by M.E. through their magazine and friendships. For further information send S.A.E. to: AYME, Box 605, Milton Keynes, MK6 3EX or Tel/Fax: 01908 691635 Web-site: www.ayme.org.uk AYME

Just clearing out some stuff and found this 20-year-old poster.

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Just clearing out some stuff and found this 20-year-old poster

by Tom Kindlon@disabled.social
True or False? M.E. is just about feeling tired? False M.E. is about being very ill Myalgic Encephalomyelitis (M.E.), also known as Chronic Fatigue Syndrome (CFS), is a physical and debilitating illness which may last for years, causing a wide range of severe and distressing symptoms:- * Severe headaches and/or muscle and joint pain * Walking is difficult, standing often impossible * Sensitivity to light, sound and temperature * Concentration and memory impairment * Disturbed balance and clumsiness * Disrupted sleep patterns IN ADDITION TO an abnormal exhaustion which is unrelieved by sleep. The Association of Youth with M.E. offers cheerful support to its members, putting children and young people under 25 years in touch with each other through its bi-monthly magazine, CHEERS, and other services. For many of our members, AYME is a lifeline. No young person with M.E. need feel isolated. Contact us at: AYME, Box 605, Milton Keynes, MK6 3EX Tel/Fax 01908 691635 email: ayme@powernet.com Website: www.ayme.org.uk Photo courtesy of Woman magazine Charity no 1059252

Just clearing out some stuff and found this 20-year-old poster.

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New factsheet from The Sick Times team:

by Tom Kindlon@disabled.social
What are fatigue and Post-Exertional Malaise (PEM)? LONG COVID ESSENTIALS: A series by The Sick Times & Long COVID Justice Fatigue is a common symptom in both Long COVID and Myalgic Encephalomyelitis (ME). Post-exertional malaise (PEM) is a specific set of common symptoms and signs that are key features of ME and some cases of Long COVID. PEM is different from fatigue, and is also known as post-exertional neuroimmune exhaustion (PENE) or post-exertional Symptom Exacerbation (PESE). Fatigue can feel like profound tiredness, exhaustion, or low energy. In healthy people, fatigue is usually a short-term state that resolves with rest. In people with Long COVID and ME, fatigue can be more frequent, severe and long-lasting. It is often life-changing. There are many types of fatigue according to studies. They can include feeling “wired”, experiencing “brain fog” or cognitive dysfunction, lacking energy for daily tasks, and even feeling “flu-like.” Debilitating fatigue is a common component of PEM.

New factsheet from The Sick Times team:

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Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence

by Tom Kindlon@disabled.social
Screenshot of abstract

Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence

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Lunch & Learn Recap: My Favorite Things (December 19, 2024)

by Tom Kindlon@disabled.social
Bateman Horne Center logo Lunch & Learn Recap: My Favorite Things December 19, 2024

Lunch & Learn Recap: My Favorite Things (December 19, 2024)

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🧵 A woman with ME ruefully looks back on when she was taken in by a rehab consultant who believed she could get her back to health & running with an ...

by Tom Kindlon@disabled.social
A Grade A Idiot Sitting in my third consultant waiting room that year, I did so without much expectation. Having put so much faith in the first two consultants, I was almost out, however, being an eternal optimist, meant a sliver of hope was stashed within my tracksuit pants pocket. Weeks previously, a fellow member of my running club, – a kind woman who had been my physio while at the club – asked if she could be of use to me. Her husband was a GP and he worked with my GP, so I agreed all three meet and discuss me, more importantly, discuss my lack of help via consultants. All of us agreed in the prescription of exercise, – as I said previously, this was 2012, the NICE guidelines were promoting exercise and the PACE trial had been published in 2011 (it’s bad science yet to be unwoven by the three of us), – even so, they worried as to my continuing without the supervision of a consultant.

🧵A woman with ME ruefully looks back on when she was taken in by a rehab consultant who believed she could get her back to health & running with an exercise program. Author is a published writer.

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Disenfranchising Talk & Communication Work of People with Chronic Overlapping Pain Conditions repositories

by Tom Kindlon@disabled.social
Thesis Disenfranchising Talk and Communication Work of People with Chronic Overlapping Pain Conditions — Karly Quaack, Ph.D. "This dissertation explores important unanswered questions regarding interpersonal communication among individuals coping with chronic overlapping pain conditions. Specifically, in this study I examine how individuals with one or more chronic overlapping pain conditions (COPCs), such as fibromyalgia, experience negative talk from healthcare providers, and then I investigate the implications of that talk."

Disenfranchising Talk & Communication Work of People with Chronic Overlapping Pain Conditionsrepositories.lib.utexas.edu/se

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I'm grateful to people who do more of this unpaid work than I do: I think I only reviewed paper myself this year

by Tom Kindlon@disabled.social
Your 2024 in review(s) Thank you for being a part of Springer Nature's reviewer community in 2024. Your valuable insights helped us to publish high-quality and trustworthy research. We have pulled together your year in review to highlight the impact you have had in 2024. Your 2024 in review(s) Share on social media: Showcase the great work you’ve done this year using the hashtag #SNreviewers, and follow and tag us @SpringerNature. We look forward to working with you in 2025!

I'm grateful to people who do more of this unpaid work than I do: I think I only reviewed paper myself this year.

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From: ‪Judyintheskynet A while ago Matthias and me made a video about very severe # MECFS and more

by Tom Kindlon@disabled.social

From: ‪JudyintheskynetA while ago Matthias and me made a video about very severe #MECFS and more.

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The Finnish Association of People with Physical Disabilities (The Invalidillitto) has conducted the first survey-based study among ME sufferers in ...

by Tom Kindlon@disabled.social
Photo of somebody sitting on stairs looking exhausted Chronic fatigue syndrome (ME/CFS) significantly limits everyday functioning 19.12.2024 Chronic fatigue syndrome (ME/CFS) is a multifaceted long-term illness whose symptoms can significantly limit the functional capacity of affected individuals. The Finnish Association of the Disabled conducted a study aimed at investigating the health status, functional capacity and coping with everyday life of individuals with chronic fatigue syndrome (ME/CFS).

The Finnish Association of People with Physical Disabilities (The Invalidillitto) has conducted the first survey-based study among ME sufferers in Finland.

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SequenceME: first of a kind genetic study

by Tom Kindlon@disabled.social
UK SequenceME: first of a kind genetic study "SequenceME will bring together experts from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME, to uncover the root causes of ME ... The project builds on the DecodeME study, the world’s largest genetic study of ME led by the University of Edinburgh and Action for ME, which investigated whether common genetic variants were more likely to appear in those with ME than those without the condition. Over 17,000 participants who donated saliva samples to DecodeME have consented to further analysis and he SequenceME partners will seek to analyse them all." The project team are seeking £7 million to analyse the first 10,000 samples.

SequenceME: first of a kind genetic study

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Cochrane announcement: Update on ‘Exercise therapy for chronic fatigue syndrome’

by Tom Kindlon@disabled.social
Screenshot of "Cochrane announcement" section from link

Cochrane announcement: Update on ‘Exercise therapy for chronic fatigue syndrome’

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