Dan Wyke 🦠➡️🧠🔥 Profile picture
Jul 28, 2019 27 tweets 19 min read Read on X
@guardian As an antidote to Andrew Anthony's unwelcome opinion piece rehashing Prof Sharpe's vindictive fabrications about ME/ME patients, your readers may like to read some actual evidence-based biomedical research about the illness. 1/
jamanetwork.com/journals/jama/… #pwME #MEcfs
@guardian This longer paper delves into more recent biomedical research, giving readers an insight into the biological basis of ME/CFS - and making Prof Sharpe's unsubstantiated hypothesis about the illness sound rather silly. 2/ #pwME #MEcfs #MyalgicE
mdpi.com/2075-4418/9/3/…
@guardian And this research summary from @MEActNet reviews the most current and important research into ME/CFS of the past 10 years. NB Prof Sharpe's research - notably the flawed and widely discredited PACE Trial - aren't included. 3/ #pwME #MEcfs
meaction.net/2019/06/12/mea…
@guardian For most people with MEcfs, Prof Sharpe's exit from the field of research can't come quickly enough. Unfortunately his status still gives him easy access to major media outlets through which he spreads calumny about defenceless patients with a multi-system illness. 4/
@guardian Genuine MEcfs experts have noted that some of their patients suffer from PTSD as a result of the disbelief/mistreatment they encounter at the hands of GPs. Prof Sharpe's lies about people with MEcfs and his false assertions about the illness add to their distress. 5/
@guardian could serve journalism better by not printing the disproven claims of an embittered psychiatrist + by reporting instead this story about a scientist devising a 'blood-based test that successfully identified participants in a study with CFS'. 6/ pnas.org/content/116/21…
@guardian Thankfully @Independent picked up this story about world renowned scientist Ron Davis - whose son is severely ill with MEcfs - developing a diagnostic tool for the complex, chronic illness. Prof Sharpe simply ignores such developments. 7/ independent.co.uk/news/health/ch…
@guardian 8/

Science thrives on the free exchange of ideas. True or false? Image
@guardian For your future reference: ME primer for journalists 9/ #pwME #MyalgicE #MEcfs
me-pedia.org/wiki/Primer_fo…
@guardian Journalists attempting to write about a complex disease like MEcfs would be well-advised to first read @julierehmeyer's excellent piece on the disastrous PACE Trial (which Prof Sharpe co-authored). 10/ #pwME #MyalgicE #MEcfs
statnews.com/2016/09/21/chr…
@guardian A more thorough reanalysis and evaluation of the PACE Trial can be found here. 11/ #pwME #MyalgicE #MEcfs #MedEd
bmcpsychology.biomedcentral.com/articles/10.11…
@guardian MEcfs patient surveys consistently demonstrate that PACE-/NICE-recommended treatments - graded exercise therapy (GET) and CBT - are harmful and ineffective. 12/ #pwME #MyalgicE #MEcfs #MedEd
meaction.net/2019/04/03/get…
@guardian In Jan this year 40 cross-party MPs debated MEcfs in Parliament + passed a motion calling for, among other things: 1. an end to GET; 2.more funding for biomedical research + 3.better medical training for GPs. Read the full transcript here. 13/
hansard.parliament.uk/Commons/2019-0…
@guardian Prof Sharpe seems to disapprove of elected representatives helping vulnerable constituents. In June 2018 MPs met again in Westminster to discuss the problematic PACE Trial + lack of support for people with MEcfs. 14/
meassociation.org.uk/2018/06/mps-de…
@guardian Speaking then, CM said: “Some ppl consider ME to be a psychological condition despite the fact pwME are not allowed to be blood/organ donors. Unfortunately, those who hold such beliefs often are in influential positions + have a blinkered view of the condition." 15/
@guardian CM continued: “I wonder what they [Sharpe et al] have to fear from proper biomedical research into ME. If such research showed they were correct, their views would be vindicated..." 16/
@guardian "... However if it threw up new information that had an impact on ME treatment and care, as medical professionals they should surely support that.” Apparently not. 17/
@guardian In an earlier Westminster debate, CM - a science teacher by training - said the PACE Trial might be "the biggest medical scandal of the 21st century". In an act reeking of white male privilege, Prof Sharpe wrote to her saying her behaviour was "unbecoming of an MP". 18/
*CM: I am of course referring to MP @CMonaghanSNP.
@guardian As @StenHelmfrid notes: "Prof Sharpe claims he's the victim of an anti-science campaign that tries to silence him. He has actually been robustly criticized by other scientists for the flaws of the #PACEtrial, and is now orchestrating a media campaign to save face." 19/
@guardian It is regrettable that Andrew Anthony + his editor (@iansample?) have been hoodwinked into assisting Prof Sharpe’s desperate attempts to salvage his reputation + enabling him to pursue his personal vendetta against a seriously ill and neglected patient community. 20/
@guardian The fact of the matter is Prof Sharpe does not like criticism of the PACE Trial and he ignores the mounting evidence of biological abnormalities present in people with MEcfs. 21/
@guardian Previous allegations made by PACE authors of threating behaviour by so-called 'activists' have officially been ruled unfounded, and amounted to no more than one researcher being 'heckled' at a seminar.😱 22/ ImageImage
@guardian Thankfully people with MEcfs aren't completely alone in countering Prof Sharpe's harmful media appearances. Here patient group @mepfuk responds to a similar piece in @PsychToday, attempting to portray informed patients as sinister 'activists'.23/ themepatientfoundation.org/2019/07/23/mep…
@guardian And in March this year @MEActNet responded to another totally biased Reuters article in which Prof Sharpe smeared MEcfs sufferers in his usual callous fashion. 24/
meaction.net/2019/03/14/fig…
@guardian In that response, @MEActNet drew attention to the "100+ scientists who have called for an investigation and retraction of the PACE trial study based on its numerous methodological flaws." 25/
thetimes.co.uk/article/call-f…
@guardian Ending this thread with one of my favourite photos: leading MEcfs scientists/researchers *and* patients collaborating at The ME/CFS International Research Symposium in Australia earlier this year.

P. S. Prof Sharpe was not invited. 26/

mecfsconference.org.au ImageImage

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More from @Dan_Wyke

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
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…


Image
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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
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
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
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
May 1, 2021
🧵1/ Every day this month I'll add a different piece of ME/CFS biomedical research to this tweet so that by the end of #MEAwarenessMonth there'll be a nice long thread of biomedical research papers to keep or share. First up:
…nslational-medicine.biomedcentral.com/articles/10.11… #MECFS #pwME
🧵2/ 'Myalgic encephalomyelitis/chronic fatigue syndrome patients exhibit altered T cell metabolism and cytokine associations', Maureen R. Hanson et al #MEAwarenessMonth #pwME #MECFS #research #MedTwitter #MedEd
ncbi.nlm.nih.gov/pmc/articles/P…
🧵3/ 'Distinct plasma immune signatures in ME/CFS are present early in the course of illness', Mady Hornig et al #MEAwarenessMonth #pwME #MECFS #researchpaper #MedTwitter
advances.sciencemag.org/content/1/1/e1…
Read 28 tweets

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