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Dan Wyke 🦠➡️🧠🔥 Profile picture
@Dan_Wyke
Jul 23, 2019 • 6 tweets • 11 min read • Read on X
Very disappointing indeed to see @SAGEPublishers publishing harmful and demonstrably inaccurate information about the treatment of ME/CFS. 1/ #pwME #MyalgicE #MedEd #MEcfs #health #NHS #GPnews #Research #SAGE
Readers (and ME/CFS patients) would be better served if Sage published the latest biomedical research rather than the same old discredited behavioral hypotheses about a serious, chronic, multi-system illness. 2/ #pwME #MyalgicE #MedEd #MEcfs #health #NHS #GPnews #Research #SAGE
Conscientious GPs/readers of @SAGEPublishers might benefit from reading this piece about the harm caused to people with ME/CFS by exercise/activity, and in particular by GET. 3/ #pwME #MyalgicE #MedEd #MEcfs #health #NHS #GPnews #Research #SAGE
howtogeton.wordpress.com/2019/05/03/why…
@SAGEPublishers editors would certainly have benefited from reading this before publishing an article that portrays GET as beneficial for ME/CFS:
'Ten Ways To Prove That Exercising Will Not Cure Chronic Fatigue Syndrome (ME/CFS)' 4/ #pwME #MyalgicE #MedEd
healthrising.org/blog/2018/12/2…
ME/CFS patients can only hope that once @SAGEPublishers editors have acquainted themselves with the considerable scientific and medical literature on exercise intolerance in ME/CFS (see link), they will swiftly offer a printed apology... 5/
paradigmchange.me/me/exercise/ #MedEd #MEcfs
... and in future cease from publishing such patently unfounded and potentially harmful nonsense. 6/ #pwME #MyalgicE #MedEd #MEcfs #health #NHS #GPnews #Research #SAGE @SAGEPublishers

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More from @Dan_Wyke

Dan Wyke 🦠➡️🧠🔥 Profile picture
Dec 20
🧵 A selection of #MECFS and #LongCovid research papers published in 2024:

1/ 'Physical exertion worsens symptoms in patients with post-COVID condition : Post-exertional malaise in patients with post-COVID condition'
scienceopen.com/hosted-documen…
2/ 'Muscle abnormalities worsen after post-exertional malaise in long COVID'
nature.com/articles/s4146…
3/ 'Dysregulation of extracellular vesicle protein cargo in female myalgic encephalomyelitis/chronic fatigue syndrome cases and sedentary controls in response to maximal exercise'
isevjournals.onlinelibrary.wiley.com/doi/10.1002/je…
Read 22 tweets
Dan Wyke 🦠➡️🧠🔥 Profile picture
Apr 13
Short 🧵

The medical community is failing #pwME badly right now. From GPs who deny patients medication for treatable symptoms to consultants who deny appropriate feeding arrangements for severely ill patients in hospital. 1/4 #MECFS #MyalgicEncephalomyelitis
Change is being blocked by bad faith actors who occupy positions of strategic importance in the medical hierarchy. The new NICE guidelines only seem to have reinforced their determination to retain the fallacious biopsychosocial model of #MECFS in the healthcare system. 2/4
This is undoubtedly a low point for the #MECFS patient community. Even somewhat better media coverage hasn't budged the dial. Ideally we would take visible direct action, but since that isn't possible, we must continue to speak out against the prejudice and maltreatment. 3/4
Read 4 tweets
Dan Wyke 🦠➡️🧠🔥 Profile picture
Feb 21
The long-awaited NIH Intramural Study of ME/CFS, led by Avindra Nath, has finally been published in full.

🧵 "Considering all the data together, Post-infectious ME/CFS (PI-ME/CFS) appears to be a centrally mediated disorder." 1/
nature.com/articles/s4146…


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"We posit this hypothetical mechanism of how an infection can create a cascade of physiological alterations that lead to the PI-ME/CFS phenotype. Exposure to an infection leads to concomitant immune dysfunction and changes in microbial composition." 2/
"These immune and microbial alterations impact the central nervous system, leading to decreased concentrations of metabolites, including glutamate, tryptophan, spermidine, citrate, and the metabolites of dopamine (DOPAC) and norepinephrine (DHPG)." 3/
Read 12 tweets
Dan Wyke 🦠➡️🧠🔥 Profile picture
Jul 17, 2022
Nath's back, finding a chronically activated immune response causing neuronal injury in the brains of #pwLC. It explains why it's taken him forever to publish his big #MECFS study, but the good/bad news is he thinks the same thing's happening in #pwME. 1/4 healthrising.org/blog/2022/07/1…
This looks very similar to what Komaroff et al suggested was happening in #MECFS 30 years ago: "patients may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system." 2/4
pubmed.ncbi.nlm.nih.gov/1309285/
Nath also found the same widespread punctate hyperintensities in the microvasculature of brains which first started showing up in MRI scans of #pwME in the 80s (see J. Goldstein) and were routinely dismissed by neurologists as insignificant. 3/4 healthrising.org/blog/2021/01/2…
Read 4 tweets
Dan Wyke 🦠➡️🧠🔥 Profile picture
Jun 24, 2022
🧵 With poliomyelitis emerging as another Brexit benefit, it's worth restating, for people who are new to the study of infectious diseases, that the history and aetiology of #MyalgicEncephalomyelitis (ME) are inextricably linked to polioviruses. 1/
The viruses which cause polio belong to the Enterovirus family of viruses. Enteroviruses typically infect the gastrointestinal tract, sometimes spreading to the central nervous system. 71 human EV serotypes have been identified but more than 100 are thought to exist. 2/
Polio was originally thought to be caused solely by three enteroviruses - polio 1, 2, and 3, included in the Salk (1955) + Sabin (1960) immunisations. Since then at least 25 EVs capable of causing paralytic polio have been identified. No vaccine has been developed for these. 3/
Read 20 tweets
Dan Wyke 🦠➡️🧠🔥 Profile picture
Feb 28, 2022
🧵Long Covid research is advancing at an incredible rate. It's taken LC researchers less than 2 years to reach a point it's taken #MECFS researchers decades to get to - a reminder how quickly progress can be made when enough money/resources are dedicated to solving a problem.1/10
Good news for pwLC but it's not clear how pwME will benefit from this progress. Despite growing recognition that the two conditions share many similarities, not all LC research acknowledges the relationship between LC and ME/CFS, or even references earlier ME/CFS research. 2/10
Some LC papers are reproducing earlier ME/CFS findings which weren't replicated (due to funding) + were ignored by the med profession. Other LC papers show findings which have been hypothesised by ME/CFS researchers but not validated, again due to insufficient funding. 3/10
Read 10 tweets

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