Just a 🧵 of me rambling: Two years prior to this I was admitted to hospital and had my first feeding tube placed. As usual I was treated awfully, not believed, constant threats of being sent to a psychiatric hospital and so much more.

I'm just gonna go ahead & document some of my primary losses:

- Lost my work for years
- Even now, can work 1/4 if that of what I used to, costing me £100ks+
- Lost my girlfriend I was in love with and thought I was probably going to marry
- Years of physical torture, some so

GTFOH. Is this for real? Do physicians actually think we want to be like this? Financial benefits??? I lost a very lucrative career bc of this monster illness, much worse off now financially. Mystique?? Did a middle schooler make this up? #LongCovid #MECFS

Back in 2020 at the start of the pandemic, I got a sense that patients with pre-existing neurologic disorders will have exacerbation of their pre-existing neurologic disorder after #Covid19 and will have worse outcomes in general than healthy people. I even put together an

We’ve literally been lied to and gaslit by charities for over thirty years.

Weak statement ME Association
We need more, better, faster…

There’s a lot of respect & admiration for Dr Charles Shepherd, Dr William Weir, Dr Nigel Speight + some others who work hard for pw #SevereME such as 25% Group but it’s time you spent cash on professional comms. 1/2

What a fantastic interview. (OMG the history of the SMC). Balm for the spirit to hear George Monbiot say (and davidtuller agree, of course) “The fact that this is not one of our very top medical priorities itself a massive scientific scandal”
#ME #ME CFS #LongCovid

They did this to my daughter, even though I am a neurologist well-versed in treating epileptic seizures! I ordered a mobile EEG, showed them all the spikes (epileptic activities), and they had to prescribe antiepileptics. None of them worked on her, and they were proven right

I dont think #POTS experts realise how all-consuming the first line treatments can be:

🚰Drink loads of water...that you can't retain because part of POTS is water-retaining endocrine dysfunction (and going to toilet every 30 minutes with orthostatic intolerance is a breeze 🙄)

🌟 Our #UniteToFight2024 program is now live! 🔥

Big team effort!

Dive into the work of our passionate program manager, Diana (PostX):

'I poured my heart into this initiative, crafting it as a message of empowerment and a hub for enlightenment. This program pulses with

PIP has nothing to do with employment.

PIP is for moderate to severe disability and it is v difficult to qualify for.

It is not something one can blag. I research this.

Sunak's idea people can go off PIP with treatment is wild and dangerous. It is disability denial,no less.

I’m saying this again.

Even if I got no benefits, I still couldn’t work. I will just die. Slowly, granted, but I will die. #ME #ToriesOut #NotFitForWork #Sunak

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.

1/ Pls consider this: I’m genuinely sorry about this; it must be distressing, and I condemn it. I & others were on receiving end of foul, unhinged online abuse & defamation by a prominent psychologist who had weight of prestigious institutions behind him. thoughtsaboutme.com/2016/02/29/has…

The NHS employs exactly zero ME specialists, and they won’t listen to ME specialists outside of the NHS because they’re outside of the NHS. It’s almost as if… the NHS… didn’t want to treat ME…

'Secondary gains' from disability is every bit as insane as talking about the benefits of slavery. Straight up batshit delusional.

Beliefs like this are as incompatible with working in health care as believing in flat earth is incompatible with geology. Absurd wankery.

May I remind new followers that there's now approximately three years' worth of tweets in this account. Many of the tweets feature rarely seen or forgotten bits of 'M.E.' history for you to study so do go through the archive if you have the time.

CW: UPSETTING CONTENT

I’m going to make this long with space so you have time to scroll past this as it’s very upsetting.

It is not other people with ME who need to see this. It’s people with power and who don’t realise what we are at risk of.

#SaveCarlasLife #ExposeMENow

🧵of clips George Monbiot talking to davidtuller about his recent article where he describes the psychologisation and treatment of #MECFS as 'the greatest medical scandal of the 21st century.'

Great interview by davidtuller with George Monbiot on ME/CFS, in which they discuss Long Covid, the the right-wing Revolutionary Communist Party, The unscientific Science Media Centre, misogyny in medicine and the overlap with mistreatment of ME/CFS and climate change denial.