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
#MECFS is conspicuous by its absence from this discussion of #LongCovid. Is it deliberately being ignored because #longhaulers are keen to avoid the stigma/disbelief/neglect people with #MECFS still experience from some medical professionals? 3/ #r4today
Or is the medical profession still not sufficiently aware of the seriousness of #MECFS to recognise it as a chronic post-viral illness with a clear relation to #LongCovid? 4/ #r4today
Either way, ppl w/ #LongCovid are done a disservice by ignoring #MECFS + not drawing on decades of biomedical research about p-v illness. And people with #MECFS are done a disservice by #LongCovid researchers/patients pretending it doesn't exist or bears no relation. 5/ #r4today
The really tragic thing is seeing researchers/doctors saying they are stumped by #LongCovid and unable to help #longhaulers exactly because they ignored #MECFS for so long or believed the psych propaganda that it wasn't real. 6/ #r4today
• • •
Missing some Tweet in this thread? You can try to
force a refresh
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
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/
"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/
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…
🧵 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/
🧵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