Poster showing a video camera on a tripod with text “BBC Lifeline Appeal – Airing Sunday 26 April.” The Action for ME logo appears in the top right, and a Lifeline logo with two reaching hands is at the bottom.

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🚨 ME on the BBC

We are delighted to have been selected for a BBC Lifeline Appeal - a unique opportunity to increase understanding of ME and share the voices of the ME community across national TV!

#pwME

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Is this summary all on bluesky? And could you give an indication of typical effect size, and over what time?
Given the nature of the treatment, we might expect quite a big placebo/response bias effect. I appreciate it's the trials with sham controls that will provide better data.

It was a hell of an opportunity, and they've frittered it away. To afraid to even take on the likes of Farage.

It does, thank you. I think it's right, but the problem is also a lack of visionary politicians in the mainstream parties. Theresa May was bang on about funding social care It's a hard choice, but we need to act. She wasn't the best person to sell it, and others pounced on a "weakness".

Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018

“It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”

Nobody is ever truely alone. There are parasites.

NASA just dropped the closest image ever taken of Jupiter...

Do you have an accessible link? It sounds very interesting.

Don’t believe headlines saying that vaccine skepticism is widespread Despite some headlines, a new poll does not show that most Americans no longer trust vaccines.

A badly worded poll is making vaccine skepticism look more common than it is. www.statnews.com/2026/04/17/v...

CDC funding scandal from the 1990s when the CDC spent $millions mandated by Congress for ME/CFS research on things it preferred.

At least those are a couple of decent studies to support, probably some of the best around. I'm not sure the NIH has much to show from spending far more. But overall, this story is still shocking (even though familiar to me), and I always appreciate your detail and rigour

1) Re-reading some ME/CFS history: in the late 1990s the CDC diverted millions of dollars budgeted for
ME/CFS into work on other diseases.

The CDC presented misleading data to Congress, a whistleblower was needed to uncover the misuse of funds.

Trial By Error: Final (Berkeley) Chapter 2026 Help UC Berkeley raise $75,000 for the project: Trial By Error: Final (Berkeley) Chapter 2026. Your gift will make a difference!

About to reach 20% of the goal:
crowdfund.berkeley.edu/project/49720

IMAGE DESCRIPTION: Photo of a man sleeping in bed in a dark room, representing fatigue. Heading - "ME/CFS Research Review: ME/CFS onset had two peaks, which may be a clue to causes"

ME/CFS Research Review: ME/CFS onset had two peaks, which may be a clue to causes

"Analysis of survey data on patients across Europe found there are two peak ages for getting ME/CFS, around 16 and the late 30s – a rare bimodal pattern. 

Read more: https://tinyurl.com/4c6xsdhk

#MECFS

I'm pretty sure there was no information captured by the survey about either.

Two other big findings: those with early onset were much more likely to be severe or very severe (odds ratio 2.4) and those with close relatives with ME/CFS we're more likely to have early onset.

Two other big findings: those with early onset were much more likely to be severe or very severe (odds ratio 2.4) and those with close relatives with ME/CFS we're more likely to have early onset.

Excellent blog on the two age peaks in ME/CFS.

Highly recommend 👇

I'd have been waiting as well, and in the end, I decided there was only one way to make sure it happened (extraordinary good luck and a frankly amazing collaboration of people mostly with ME and those close to them. Getting the replication in DecodeME was a big bonus.

Incidence age is bimodal for myalgic encephalomyelitis/chronic fatigue syndrome, with higher severity burden for early onset disease - PubMed Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), is a disease of uncertain origin. Studies of Norwegian health records have suggested that ME/CFS incidence across age groups is bimodal...

Ah, excellent. I'd been waiting for someone to repeat the findings of that large Norwegian study showing two spikes in onset of #MECFS. This study also found that early-onset disease tended to be more severe.

@simonmcg.bsky.social first author. 🧪

pubmed.ncbi.nlm.nih.gov/41983041/

Incidence age is bimodal for myalgic encephalomyelitis/chronic fatigue syndrome, with higher severity burden for early onset disease Abstract. Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), is a disease of uncertain origin. Studies of Norwegian health records have sugge

The edited and formatted version of the paper if now up
academic.oup.com/ooim/article...

ME/CFS onset had two peaks, which may be a clue to causes A new study strengthens the findings that ME/CFS is a disease with a highly unusual feature. Analysis of survey data on patients across Europe found there are two peak ages for getting ME/CFS, arou…

Blog about the recent study finding evidence across Europe for ME/CFS peaking at two different ages, a v unusual feature. The peak ages of 1about 6 and late 30s is a unique combo even among diseases with two, and could be a clue to the biology of ME/CFS.

mecfsresearchreview.me/2026/04/15/m...

When I saw the film Harriet recently, the first time I knew anything about this, I assumed the end scenes about leading an attack from water during the civil war was Hollywood license because it was so staggering on top of everything else. But no.

So this is the NIH acting under pressure from Congress, not that they have seen the light?

1) Some good news: MEAction announced that it has secured a meeting with the NIH Director, Dr. Bhattacharya, on May 13th to discuss funding for the NIH ME/CFS Research Roadmap.

NIH funding for ME/CFS keeps falling - ME/CFS Science The National Institutes of Health (NIH) in the United States is spending less money toContinue readingNIH funding for ME/CFS keeps falling

2) This is highly needed. While Europe is making some progress, US funding for ME/CFS research seems to be in decline for several years.

We wrote a blog post about NIH funding for ME/CFS last year:

Abacus for a, river for R etc. I find it after going through a few words, I'm on my way to sleep. Like most new tricks, it might not last for long, but it does feel different to other approaches. Recommended by Claude AI, which said there was evidence for it working.

Has anyone else tried "cognitive shuffling"?
I found it very helpful getting back to sleep when I wake in the night, a huge problem for getting back to sleep when I wake in the night. Take a word such as market and very briefly imagine something different fo each letter, e.g. mango for M...
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I'm glad they set parameters for duration and severity. But as as ever with long Covid, what exactly are they talking about? In the absence of Covid, would there be similar conditions for some people? (I think the Norwegian employment studies suggested that might be the case).

They were often subject to "bonded labour", effective slavery where some nominal unknown debt – often inherited from parents – meant that people would be working forced to work forever for almost nothing.