I so wish I had something good to share about GPs but here I am again drawing attention to poor practice. Telling patients with ME they're 'hyper-sensitive' to their symptoms, implying they somehow aren't real, is textbook gaslighting bordering on psychological abuse. 1/ #NHS
People with ME are often attuned to the physical manifestations of their illness because ME is a multi-system disease which at any one time inflicts on sufferers a wide range of symptoms, making their lives a living hell. 2/ #teamGP#GPnews#pwME#MyalgicE#MedEd#MEcfs#NHS
If you are a GP who feels let down by their training or just wants to improve their practice, I recommend watching this short video by Dr Kaufman on diagnosing and managing ME. 3/ #teamGP #GPnews#pwME#MyalgicE#MedEd#MEcfs#health#NHS
Remember, even if you work within a medical system whose narrow constraints make it difficult to properly treat patients with ME, your words alone have the capacity to lessen their suffering, or add to it. 4/ #teamGP#GPnews#pwME#MyalgicE#MedEd#MEcfs#health #NHS
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🧵 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…
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…
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