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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

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…




"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/

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/

🧵 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/

🧵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

🧵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…

The British Association for CFS/ME (BACME) has very little credibility in the eyes of UK ME/CFS patients. The NHS clinics who its members run have been delivering harmful and inappropriate treatments (GET/CBT), with no system in place for reporting harm, for years. 1/ #MECFS Now, just weeks before NICE releases the draft of its ME/CFS guidelines review, BACME puts out an announcement purporting to reject the biopsychosocial view of ME/CFS and offering a tweaked version of its main treatment (graded exercise therapy) to minimize its culpability. 2/

There is growing awareness that proponents of psycho-behavioral interventions have disseminated the idea of so-called 'medically unexplained symptoms' (MUS) throughout the NHS to deny patients with underlying organic dysfunction proper recognition/treatment.1/ #MECFS #LongCovid Patients with Myalgic Encephalomyelitis, aka Chronic Fatigue Syndrome (ME/CFS), have long been their target, but in recent years, emboldened by the government’s funding of counselling services through the Improving Access to Psychological Therapies (IAPT) programme,... 2/

Petition update: I provided 15 academic/media sources within hours of @38_degrees pausing my petition. I've still not heard back from a moderator. I'll give them til tom morn then switch platform. Sorry to all who shared it + were unable to sign themselves. 1/ #meawarenesshour Tbh I feel pretty unhappy about how 38 degrees approached this and the general lack of administrative support. 2/

A tension has become apparent between those who seek to have #LongCovid recognised as a discreet post-viral illness, and those who see the long-term effects of infection by SARS-CoV-2 as another manifestation or subset of #MECFS.
1/ This tension reveals an anxiety about insufficient/inadequate research into/treatment for #LongCovid, and is an implicit acknowledgement of the stigma/neglect experienced by those with an already-recognised post-viral illness such as #MECFS. 2/

Programme on #LongCovid on @BBCRadio4 this morning. Treatment unlikely to involve a prescription for medication; instead work with a physiotherapist and psychologist. Patients better start getting used to self-management and inadequate/inappropriate support from NHS. 1/ #r4today Presenter's claim #LongCovid is "a brand new illness" is not strictly true. Some symptoms ie. respiratory damage clearly relate to Covid-19, but many more symptoms #longhaulers suffer clearly resemble the post-viral illness par excellence #MECFS. 2/ #r4today

Don't worry #longhaulers + #LongCovid patients. If the experience of ppl with #MECFS is anything to go by, there's a psych researcher somewhere busily manipulating the data to "prove" that all you need to recover from your devastating multi-system assault are 12 sessions of CBT. And be equally sure that somewhere there's an editor of a prestigious medical journal prepared to publish/defend the results even though the inflated claims + many methodological flaws are glaringly obvious to anyone who understands how bona fide research ought to be conducted.

📢 Dear #longhaulers + #LongCovid patients, if you're researching #MECFS online, please avoid the #NHS website which contains outdated/inaccurate + potentially harmful information. Instead, please refer to one of the following reliable sources: meadvocacy.org/what_is_me meaction.net/about/what-is-…

1/ At least 250,000 people with chronic illnesses like #MECFS, #Fibromyalgia, #POTS and #EhlersDanlosSyndrome are currently denied thorough investigation and effective health care in the UK. 2/ This number has the potential to double after #COVID19 with many 'long-haul' patients experiencing persistent symptoms which often overlap with the abovementioned illnesses. #LongCovid

Some mental health service providers (some familiar names among them) are already positioning themselves to take care of the long-term health of #COVID19 patients. Care must be taken to avoid the same errors made in treating patients with #MECFS 1/ #pwME #MyalgicE

https://twitter.com/TheLancetPsych/status/1250693063225327616

While some patients will surely benefit from mental health support, all post-acute #COVID19 patients should receive ongoing medical treatment for all long-term sequelae, as well as adequate financial support from government. 2/ #pwME #MyalgicE #MECFS

The introduction of so-called 'medically unexplained symptoms' (MUS) to GPs' diagnostic toolkit means many people with complex, chronic illnesses will not receive proper medical attention or thorough investigation of their physical problems. 1/ #pwME #MyalgicE #nhs #MedEd The routine channeling of ME/CFS patients to psychological services delivered by IAPT cements the NHS's view of the illness as psychogenic. This is out of step with the scientific evidence, a waste of resources and a grave disservice to an already underserved patient group. 2/

"The signs, symptoms and consequences of the chronic fatigue syndrome may be considered those of an acute infection that does not resolve." Prof James Jones MD 1/ "What are some possible reasons that generalized symptoms that are the products of the host's response to the infection or immune injury persist or recur for such long periods of time?" Prof James Jones MD 2/

Curious discovery. Cigar-wielding MD, Henri Rubenstein, coined the name 'Spasmophilia' to describe "a specifically French syndrome" which nevertheless "looks exactly like ME". 1/ #pwME #MyalgicE #MEhistory Some of his observations were questionable: "We understand spasmophilia as a neuro-muscular hyperexcitability... The primary causes of this neuro-muscular hyperexcitability syndrome are believed to be found in metabolic disorders". 2/

"It is likely that this illness can be triggered by a heterogeneous group of forces and circumstances." Prof A. Komaroff MD, 1990 1/ #pwME #MyalgicE #MEhistory "An attractive model is: immune dysfunction is produced as a consequence of exogenous lymphotropic viruses, environmental toxins, stress or depression; the immune dysfunction leads to the reactivation of dormant, latent infectious agents;" Prof A. Komaroff MD, 1990 2/ #MEhistory

The following quotes are from this paper by Ramsay & Dowsett, produced for the First World Symposium on ME in 1990. Unfortunately Ramsay died a few weeks before the event. 1/ "Three factors have done much to cause the obscurity surrounding the aetiology, pathogenesis and prognosis of Myalgic Encephalomyelitis." 2/ #pwME #MyalgicE

"If you do believe it [the Lightning Process] has been validated as an effective treatment and/or the article is not removed, then the BMJ no longer has credibility in the eyes of a growing number of clinicians."

https://twitter.com/davidtuller1/status/1171856164180676608

"I am frankly surprised that BMJ would be willing to risk its reputation to defend a study that looks on the outside like a corporate front."