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If there are 400k people with #myalgicE, and we estimate 200k unable to work (£25k average salary) is a £5 BILLION cost to #Economy P.A. What is the cost to make serious strides towards treatments? Isn't it worth £100 Million investment? #StillTheSaME #WorldMEDay #MEAwarenessDay

Why does every journalist 'accept' that The Labour Party plans to cut PIP and LCWRA will save anything at all? The last major 'reform' of disability benefit in 2012 (DLA to PIP transition) said the same and ended up costing far more ... asserts the OBR

Tonight’s huge climbdown is testament to the countless disabled people who have tirelessly fought these cuts. Yes, UC was a loss and there’s more to do, but let’s not underplay this: a government with a vast majority has been forced to u-turn. Because of the disabled community.

Here's a wild suggestion: invest in finding diagnostic biomarkers and effective treatments for #LongCovid and #MECFS and more people will return to work. Health is a prerequisite for economic growth. #r4today #DisabilityBenefits #DisabilityRebellion The Labour Party

#bbcqt #bbcaq #BBCNewsNight #bbcbreakfast #pmqs #skynews #GBNews #itv #Labour #KeirStarmer #WelfareReform

Is this even legal? Combined with the perpetual lying to the house about PIP being an out of work benefit and tackling supposed fraud that doesn't exist. Seems like there should be some kind of legal challenge by disability charities? #WelfareReform #WelfareBill #pmqs #bbcqt

The Universal Credit and PIP bill was passed yesterday evening amid chaotic scenes but cuts to PIP will be removed. The bill still includes measures that will take away support from disabled people. #MillionsMissing #MyalgicEncephalomyelitis

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We have a very real chance of getting the UC Health two-tier disaster that remains in the Universal Credit paper dropped. If you haven't already, and have the spoons, please send this email or your own version to your MP. If you do your own, pls mention the amendments👇#BinUCBill

Grok really is #pwme friend in any situation where the ME patient community is being unfairly persecuted/demonised/criticised, it is the voice of reason and a more trusted info source than any one individuals comment. #MECFS #MyalgicEncephalomyelitis

Fatigo_ME KimH Paul Garner Science for ME online forum Yes, it's a reasonable concern. Historical psychologization of ME/CFS, symptom overlaps with FND, and evidence of misdiagnoses (e.g., per ME Association and PMC studies) validate fears of bad-faith use to label complex conditions as "hysteria." FND is legitimate but requires

KimH Fatigo_ME Paul Garner Science for ME online forum xAI KimH Thank you for your input. My response drew from evidence like ME Association reports and PMC studies on ME/CFS misdiagnoses. FND is a valid condition, but historical psychologization justifies concerns about its application. I aim to reduce stigma for all by

sorry i’ll stop going on about this soon i promise, but i’m having all kinds of feelings about a book i wrote which grew out of disability & post-viral illness & contains the true history of how ME has been systematically ignored by medicine for generations got a rave NYT review

PEM should be called DMBI (delayed metabolic brain impairment/injury). Impairment if you go back to previous functional and metabolic capacity (baseline), injury if not. Fuck “malaise” and unscientific terminology, my brain is shutting down due to repeated metabolic injuries.

🚨 Chronic Lyme hits tennis star

#Wimbledon viewers may have heard Pavlyuchenkova has Lyme Disease. It's worth noting that at least 10,000 in the UK (& potentially many of 500k with ME/LC) have active Chronic Lyme WITHOUT #NHS treatment. Few can access private treatment costs of £20k+ #bbcnews #Tennis #bbcsport

1) A research team at the University of Surrey are studying the electrical properties of white blood cells in ME/CFS. They reported that after salt treatment, these proporties change differently in ME/CFS donors compared to healthy controls and patients with multiple sclerosis.

Rename MECFS All of this. I was severe for several years , sick in total for 5 ( was long Covid then severe ME) Buy my biggest noticeable improvements were b12 ( injected every other day / still doing so ) and abilify. I’ve also been on triple therapy for 2 years and whilst it didn’t

#Bovaer as expected by people with common sense and basic nutritional knowledge. #boycottbovaer #BBCBreakfast #bbcnews #farming #health #Nutrition #skynews #GBNews

This is a slightly hard abstract to grasp as it’s very biochemical, but I think in lay terms: They’ve found a problem with breakdown of cell membranes in pwME, that is related to estrogen, and is worse in more severe patients. Importantly, it could be treatable with drugs.