Thankyou @Olly Mann 🎙️, @Holden Frith, @leafarbuthnot and @Harriet Marsden for covering #MECFS and the new Government Plan. I just want to highlight a few things you may not be aware of.
The Week UK@TheWeekUK
Aug 11 23
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Does homo sapiens have a new cousin? Are people with ME about to get better treatment? And is three dates in one day too many? @Olly Mann 🎙️ joins @Holden Frith, @leafarbuthnot and @Harriet Marsden on The Week Unwrapped podcast.
trib.al/kY6ziiK
Post Exertional Malaise (PEM), is the hallmark symptom of ME which means patients deteriorate following even minor activity. Exercise makes patients worse by definition. Pulitzer prize winner Ed Yong gives a good description of PEM.
archive.li/2023.07.27-111
The article opposing NICE was largely written by Peter White lead author of the PACE trial. NICE graded all research (inc PACE) as low or very low quality. Opposition is from a minority with close links to the research or researchers. All charities support the guideline.
There are major issues with the article (note: its an article defending research that NICE graded as poor quality).
Professor Brian Hughes @Brian Hughes has written extensively on the subject. His summary about the NICE guideline is a good introduction.
thesciencebit.net/2021/08/15/the
This rapid response highlights some of the main issues with the article. For example referencing obsolete CDC diagnostic criteria from 1994, which doesn't include PEM (the hallmark of ME).
jnnp.bmj.com/content/early/
George Monbiot has also written about issues with Graded Exercise and CBT research for ME. His Twitter thread has more detail about how the "media establishment closed ranks around bad science"
twitter.com/GeorgeMonbiot/
His article is also worth a read.
theguardian.com/commentisfree/
George Monbiot@GeorgeMonbiot
Apr 14 21
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1. There’s an aspect of this story that I didn’t have space for in the column. This is about how the scientific and media establishment closed ranks around bad science, defending it from legitimate questioning and criticism.
The NIH, The Agency for Healthcare Research and Quality, Cochrane and NICE have all raised serious concerns with the diagnostic criteria used in research.
Patients that showed benefit in research might not have had ME.
Patients and advocates are opposed to the treatments because they don't work, the research is flawed and there are high reports of harm. ME does not have a psychological component so a psychological label is not appropriate.
In 2015 The IOM report concluded that ME "is a medical-not a psychiatric or psychological — illness" . 15 experts reviewed over 10, 000 peer reviewed studies to produce the report which cost $1M.
me-pedia.org/wiki/Institute
Viewing #MECFS as a condition curable through attitude and effort, has caused a lot of harm. Its stigmatizing, It wrongly suggests patients can cure themselves by their own effort and patients often get blamed for not helping themselves.
Full Segment from the This Week Unwrapped podcast that covers #MECFS and the Governments new delivery plan.
youtu.be/efNFekjw57g
Adam
@ABrokenBattery
Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
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