I used to post news and interesting information on ME/CFS but have retired to focus on other things.

Joined November 2015
Replying to @AlanLevinovitz
@AlanLevinovitz mind-body approaches intentionally aim to change the illness-related beliefs of the patient. Beliefs such as "If I exceed my activity limit my symptoms are likely to worsen for some time", "I'm disabled", and "There is no treatment".
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In my opinion the existing research is consistent with the idea that attempting to cure the illness by changing the illness-related beliefs and identity doesn't work. It leads to a change in illness-related beliefs and identity but not a reduction in disability.
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It's not difficult in a research setting to change a person's perception of their symptoms, their beliefs. One mistake the psychosomatic approach is making is assuming that changing these is equivalent to having changed the illness.
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The painful truth about psychosomatic hypotheses is that patients, doctors and the public are willing to suspend rational thinking and believe in miracles when they can't cope with the negative emotions they experience when confronted with unexplained disabling illness. #mecfs
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It also leads to low standards in research and excessive enthusiasm for research findings that aren't reliable or meaningful. There has been a shift towards more skepticism and attention to quality and reliability of #MECFS research, which I find very encouraging.
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The psychosomatic approach also often explicitly aims to change the identity of the person. The various illness related beliefs are seen as bad. There are parallels to conversion therapy here.
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Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s
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ME/CFS News retweeted
New pre-print from Prof Jonathan Edwards: The Concept of ME/CFS qeios.com/read/NXCXM1 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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ME/CFS News retweeted
Now published CDC-funded study: Cognitive assessment in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS) frontiersin.org/journals/neu… "The challenges of a clinic visit (including cognitive testing) can lead to further cognitive deficits" #MEcfs #CFS #PwME
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ME/CFS News retweeted
We are excited to announce an $800,000 donation to Mount Sinai to support a clinical trial of the drug rapamycin in patients with long COVID. The trial will be conducted at CoRE: a clinic directed by Dr. David Putrino and PolyBio's Dr. Amy Proal: polybio.org/polybio-supports…
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EMEA issued this statement at 74th Regional Committee Meeting for Europe on the agenda item discussing the State of Health in the WHO European Region europeanmealliance.org/emea-…
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A summary of the funded studies: 1. care and treatment needs of severely ill #MECFS patients 2. rare genetic variants 3. antibodies against the microbiota 4. mast cells 5. skeletal and heart muscle metabolism 6. glycosylation-related biomarkers 7. cerebral oxygen metabolism
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I really hope this isn't about ME/CFS - again. The "silencing" story around this illness has a. been inflated beyond recognition. b. been used for the past 13 years to protect bad science from effective scrutiny. theguardian.com/commentisfre…
We are delighted to announce that @deb_cohen, @PaulGarnerWoof, and @hanachronism will be joining our panel next week, 29 Oct, 5:30pm at @LJMU! The discussion will explore how scientists and scientific research are being silenced.  Register now: indexoncensorship.org/events…
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This study suggests that biological mechanisms underlying pathologic fatigue in #MECFS patients also underlie fatigue symptoms at a broader population level. academic.oup.com/sleep/advan…
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The ME Association refutes the letter regarding graded exercise therapy (GET) as a treatment for ME/CFS published in the Guardian Read more: meassociation.org.uk/ttqt #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #NICEGuideline #GET #CBT
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