ME/CFS (kbin)

A much-touted study recommended therapy and gradually increasing exercise for patients with chronic fatigue syndrome. Problem is, it was based on bad science.

I'm actually willing to try this out. The risk seems low enough and I don't have anything else to do.

Health officials are releasing the first nationally representative estimate of how many U.S. adults have chronic fatigue syndrome: 3.3 million.

Women and people with lower incomes are among those more likely to suffer from a debilitating illness that’s gained attention since the COVID-19 pandemic, survey data shows.

National Center for Health Statistics: Data from the National Health Interview Survey

In 2021–2022, 1.3% of adults had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The percentage of adults who had ME/CFS increased with age through ages 60–69 and then declined among those age 70 and older.
White non-Hispanic (1.5%) adults were more likely to have ME/CFS compared with Asian non-Hispanic (0.7%) and Hispanic (0.8%) adults.
Adults with a family income less than 100% of the federal poverty level (2.0%) were more likely to have ME/CFS, followed by those at 100–199% (1.7%), and those at or above 200% (1.1%).
The percentage of adults who had ME/CFS increased with increasing rurality of their place of residence.

By David Tuller, DrPH. Time magazine recently published an opinion piece that calls for an end to biomedical research for long Covid—based, it seems, on what the authors view as the ME/CFS precedent. The title: “How to End the Futile Blame Game Over Failed Long COVID Research.” Although research still has “a vital role” to play, they argue, it needs to be “a different kind” that “no longer focuses on biomarkers and mechanisms” because such studies “are sure to provide ‘promising’ but false leads and divert resources.” (The piece was adapted from a recent article that was published by STAT.)

via @ahimsa_pdx

Join our support group for pw ME/CFS, FM, Long COVID, and their loved ones. The first 30 minutes are focused on a topic followed by a general discussion.

Highlights
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Neuroinflammation is the most convincing hypothesis for ME/CFS pathophysiology, explaining its multifaceted symptoms and pathological features.

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Across various neuroimaging techniques, including MRI, MRS, PET, and EEG, the frontal cortex was the most frequently observed region.

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Our meta-analysis data showed that not only the insula and thalamus showed significant hypoactivity, but also the limbic system.

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Cortical-limbic disconnection leads to the abnormalities of metabolite and brain waves, which eventually contribute to main symptoms of ME/CFS.

The ME/CFS Research Roadmap webinars are virtual events open to the public during which ME/CFS experts will present current research, knowledge gaps, and future research opportunities for ME/CFS. Register here. The webinar topics include:

Nervous System
Immune System
Metabolism
Genomics/Genetic Susceptibilities
Chronic Infections
Physiology
Less Studied Pathologies
Circulation

These events also provide additional opportunities for questions, comments, and new ideas from interested stakeholders and the broader ME/CFS community, including researchers, clinicians, advocates, those living with ME/CFS, and others. Learn about who is participating in webinar planning by visiting the who we are page.

I’m 40 years old! I’m doing another fundraiser for my birthday and I want to help Ronald W. Davis buy some instruments he needs for his lab that will accelerate his research and further unleash his brilliant mind. The fundraiser is live on Spotfund now...

Hope this crosspost works.

[email protected] totally gets us.

From their website:

We - the team of the documentary #ChronicallyIgnored #ChronischIgnoriert (ZDF/ARTE, production company: Inselfilm, Berlin & Navigator Film, Wien, 90 minutes) - need your help!

We would be happy to include your photos!

Portraits, face, in bed, on IV, in wheelchair, subjective, from the side, from above, frontal, total, close, whatever you can think of, all that "represents" your serious illness. (Please no writings on the photos). Maximum 3 photos per person (in good resolution).

Change.org, Stop the ABC from broadcasting misinformation about ME/CFS

October 28, 1pm-3pm ET on Zoom. Massachusetts CFIDS/ME & FM Association. Will be recorded for later viewing.

Ed Yong is a celebrated science journalist who cares deeply about accurate, nuanced, and empathetic reporting; clear and vivid storytelling; and social equality. His coverage of ME/CFS and Long COVID for The Atlantic has been groundbreaking, and has contributed to a changing public perception of these illnesses, moving us toward a public health agenda that recognizes the serious nature and commonalities of infection-associated chronic conditions, and supports advances in research and clinical care.

DecodeME is the biggest, grandest ME/CFS study ever. It’s not just that it’s big (25,000 people) that makes it unique – it’s what it’s trying to do. DecodeME is a genome-wide association (GWAS) study that is looking for small changes in genes that may open the window to ME/CFS. We’ve […]

Orthostatic intolerance (OI) is a core diagnostic criterion in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The majority of ME/CFS patients have no evidence of hypotension or postural orthostatic tachycardia syndrome (POTS) during head-up ...

Link to original article here: Washington Post

Join the ME/CFS Biomedical Partnership to help create the world’s biggest study of causes of ME/CFS.

Using a tool called Raman spectroscopy UK researchers state they have gotten closer to producing a long-sought diagnostic biomarker for chronic fatigue syndrome (ME/CFS)

This petition has been posted on behalf of the committee of the international Science for ME forum:

People with ME/CFS are being harmed by inaccurate clinical advice resulting from a flawed Cochrane Review.

Cochrane is an international body that publishes reviews of research evidence for treatments of diseases; it has a lot of influence over clinical guidelines used around the world. Four years ago, in October 2019, Cochrane published 'Exercise therapy for CFS', supporting the use of exercise therapy for chronic fatigue syndrome (more correctly known as ME/CFS).

Cochrane's editor-in-chief admitted the review was not fit for purpose on publication, but it continues to be hosted in the Cochrane Library and cited in scientific journals and clinical guidelines. This is despite government organisations such as the UK's NICE (NG206: 1.11.14) and the USA's CDC having found, following unbiased evaluations, that there is no evidence that exercise therapy is effective for ME/CFS. This is also despite virtually all ME/CFS patient organisations rejecting exercise therapy as a valid treatment of the disease and many people with ME/CFS reporting becoming much sicker after graded exercise therapy.

Oral rehydration solution may provide a cheap, effective and safe way to improve orthostatic intolerance in chronic fatigue syndrome and POTS.

(from 2020 but new to me)