Thread by @ABrokenBattery

🧵ME/CFS is often referred to as neglected, under-researched and poorly understood in the media. This is obviously welcome but feels like a disservice when it has also been described as one of the biggest medical scandals of this century.

- Explainer -

This is particularly relevant to #LongCovid where there is growing evidence a subset looks identical to ME/CFS and many meet the diagnostic criteria. It is important to acknowledge the scandal and not repeat the same mistakes.

Graded Exercise Therapy and CBT have been prescribed for people with ME/CFS for decades but have recently been withdrawn by NICE & the CDC because the supporting research was too low in quality and there have been high reports of patient harm.

The £5M PACE trial was the largest trial of its kind & supposed to be definitive but was debunked after an FOI request & lengthy legal battle in 2016.

The authors lowered the threshold for recovery mid trial and re-analysis using their original protocol showed no benefit.

Thousands of people have been harmed. The hallmark symptom of ME/CFS is an abnormal response to exertion. Over 50% of patients report that Graded Exercise makes them worse (11 surveys/18,000 patients).

Many report substantial deterioration, which can be permanent.

In 2015 I was told that Graded Exercise would cure me & was not warned of the risks. I suffered a severe relapse & went from being able to work & walk 30 mins to being unable to shower or care for myself. I never regained any of that lost function. There are many similar stories.

The impact has been devastating, patients that refused treatment have been denied benefits and insurance claims. They have been threatened with being sectioned and parents have faced child protection proceedings. It has led to widespread misunderstanding and added to the stigma.

When patients and advocates raised concerns about the quality of research and harm they were portrayed as anti-science & anti-psychiatry in the media.

They were smeared as militants and extremists and compared to anti-vaxers and animal rights activists.

Claims of harassment were found to be "grossly exaggerated" in court.

Trudie Chalder, one of the PACE authors, accepted that

"unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants”.

The Science Media Centre helped organise the harassment campaign.

Simon Wessely the architect of the treatments being criticised was the focus of many stories but was also on the board of the SMC, they even nominated him for an award for bravery which he won.

The withdrawal of Graded Exercise and CBT for ME/CFS means the last 30 years of research has achieved nothing. Millions of pounds wasted and thousands of patients harmed in the process. Biomedical research has been held back, we still don't know the cause or have any treatments.

In the same period MS, an equally disabling disease, has seen a dramatic shift from no treatments to 14 disease modifying drugs available in the UK.

But how can ME/CFS research possibly make up for lost time when it gets 30x less funding per patient in the UK?

For more background watch this excellent film by @dialoguesmecfs .

Chapters 1,4 and 6 are essential if you can't watch the whole film.

dialogues-mecfs.co.uk/films/the-tang…

References:
Overlaps with Long Covid
jospt.org/doi/full/10.25…

healthaffairs.org/do/10.1377/for…

FOI Court case
…tionrights.decisions.tribunals.gov.uk/DBFiles/Decisi…

SMC & Smear campaign
me-pedia.org/wiki/Intimidat…

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