Great thread of comments on what the actual ‘fatigue’ of #MEcfs is like.
It’s the muscles stupid! #LongCovid

Great thread of comments on what the actual ‘fatigue’ of #MEcfs is like.
It’s the muscles stupid! #LongCovid

'Experts are getting nearer to producing a treatment' - Dr C Shepherd '92
Those of us who had ME then & never recovered have been in a perpetual cycle of having our hopes built up then smacked back down again, for decades
🔃💔🔃

#pwME

Throw out hypotheses with me: When I think too hard, my brain swells. I have to keep my head bent forward to not crush my brainstem. What could be going on here physiologically? Im fused C0-C2 and 99% sure I’m not tethered.

Do yall get the “muscle failure” feeling with #PEM ? Like even holding my phone makes my arms feel like I just did a super set of pull ups. Feels like my muscles are made of ashes. #muscleweakness doesn’t describe it. #longcovid #Moonshot

#bringmilliehome
This hospital is talking bull💩 now.

I had a private diagnosis of Haitus Hernia and my GP, plus a Gastro dept in my NHS hospital accepted the diagnosis.

This is being awkward because they've been made to look incompetent.

Pack it in.

This is what Dr Shepherd is doing to support #SaveCarlasLife #BringMillieHome
(Click to read the whole thing) 🧵

This is absolute bullshit. I have had M.E. for 10 years and have occasionally had fit notes to reduce my hours temporarily to AVOID longer-term or full-time sickness (and sick leave). They literally keep me, a disabled woman, in work. 🤷‍♀️

“Sunak accused of launching ‘full-on assault on disabled people’”

My income is comprised of ESA and PIP. I’m sure it’s obvious to most people with brains, but removing these will not cure my ME and get me back to work.

#SickNote #RishiSunak #Disability

theguardian.com/politics/2024/…

There is no sicknote culture.

PEOPLE ARE SICK

Sunak punished self employed people in Pandemic many not eligible for help, people in work - losing tax credit to UC, people on benefits suffering COL crisis - food/energy rises, Pensioners - waspi & pension age rise.

#RishiSunak doesn't care about you, he cares about the rich.

PIP is meant to be for the extra costs associated with disability: in reality it’s the only non-means tested disability benefit (unless you count a subset of ESA for which you have to have paid x amount of NI contributions to get - difficult if you’re disabled very young) 🧵

Who would you rather have responsibility for issuing sick notes, GPs or WorkWell employees who have been instructed to reduce the number of people signed off sick? #r4today

How safe is it to take responsibility for issuing sick notes away from medical professionals and giving it to the DWP which has been criticised for contributing to the death of hundreds of sick and disabled benefit claimants by abruptly terminating payments? #r4today

Update about Millie:

Petition
change.org/p/save-millie-…

Fundraiser
justgiving.com/crowdfunding/b…

#BringMillieHome #MilliesevereME #SevereME #pwME #saveMillie #DontLetMEDie

Just as an aside, GPs don’t have the ‘right’ to sign someone off sick. They have the responsibility. It’s not one that they particularly enjoy having. But it’s often a vital part of a treatment regime. And formulating and prescribing treatments for ill people is what doctors do.

Missing from the conversation is the fact that most people who are signed off sick are unable to work because they are, well, sick! No amount of Nazi-style guff about the supposed benefits of work will change that. #r4today

I feel ashamed of being human, let alone a physician, when I see what’s happening to #ME patients in hospitals. Please, we need to do something. While efforts are organized for people in England, this is America. She lives in New York. We should organize better here in America.

There is no such thing as “a sick note culture.” There is a record high NHS waiting list, crippling housing costs, widespread food poverty, stagnant wages and inadequate benefit rates, a broken social care system, dire mental health services, and closed Sure Start centres.

I have been made aware of a major risk factor some people have that makes COVID a more serious risk for them than for others. As far as I know, there has not been a systematic study to quantify this risk, nor been any public health attempt to warn this group. /2