ClairME

♿️ #pwme Dying very slowly from progressive #SevereME, so mostly reposts. Positive thinking didn't heal me! Can't live til there's a cure. #MillionsMissing

[ClairME @ClairME_]

🧵👇#LongCOVID #MassDisablingEvent
#MEcfs #pwME #MyalgicEncephalomyelitis

[Laura Elliott @TinyWriterLaura]

it’s wild having ME in a pandemic, because half of people don’t think it’s real while the other half are so horrified they think it’s fine to say things like ‘i’d kill myself if i were you’, meanwhile millions of people are getting Long Covid & many of them have no idea ME exists

[Todd Davenport @sunsopeningband]

Grateful to be named one of the 317 Catherine Worthingham Fellows of the American Physical Therapy Association. Patients, participants, colleagues, friends, collaborators, and people with whom I disagree have pushed me for years to best help others in need.

I owe this to them.

[Todd Davenport @sunsopeningband]

If it meets case definition criteria for ME...maybe we call it ME. 🤷‍♂️

[Whitney Dafoe @DafoeWhitney]

🚨Please help. One of our brightest lights in this community, @rhirhiarhii (Rhi) is severe and has been living alone in a hospital for months, tortured by the usual BS no understanding of the condition by nurses resulting in not listening to her sensitivities and giving her wrong meds or witholding meds, etc. She wound up in the hospital after losing what was a stable home and care. And once again, she is all alone trying to protect herself from abuse.

The New Zealand government has some (once again) f*ed up policy/reasoning why they have taken away all her benefits specifically because she is living in a hospital (where she needs the benefits even more than before)

She has gotten out of the hospital finally 🙏🏻 but her rent is $400. Her benefits used to be $480 and they have cut them to $56 because she was living in a hospital 🙄. And they won't even restore them now that she is out of hospital. $56 to live on! She has to somehow cover rent, meds and food and everything else as well with that.

She is not even asking for donations right now to support her, she is trying to lead the charge for change in NZ, while severe, without benefits, to change this policy and is asking this community to sign a petition.

Please, let's all sign this petition she put together. She is sacrficing her health to try to help others in her situation. She has been screwed over and instead of worrying about herself, she is worried about everyone else facing the same thing. A truly beautiful act. Let's support that!

You do not need to live in NZ to sign, just put 0000 in the zip code.

https://t.co/FI9mECW46J

Please sign and share this for the sake of severe patients in New Zealand and to support Rhi's selfless effort to help them. Thank you! ❤️

[Long Covid Advocacy 💙 @LongCovidAdvoc]

If several million are to have a chance of recovery from #LongCovid & #ME & a decent model of care & research established.
Wessely has to go from NHS England non-exec board @denis_campbell @NHSEngland

Here's hoping 🤞🍀

https://t.co/iH3KZkS7ob

[penny #ME🕊️🕊️ @TheOldLostRoad]

@AshleyDalton_MP @wesstreeting #FundThePlan

[Ben H @benh_mecfs]

It really is a different kind of messed up;

KNOWING so truly and intimately how colossally devastating + life-ruining a disease ME/CFS is—akin to other incredibly serious biological diseases—but being in 2025 and still seeing such casual dismissal by so many.

#MECFS

[Katy B @KatyBruce108]

@AshleyDalton_MP @wesstreeting
Please listen to this #ME expert Dr Nigel Speight speaking about the truly horrifying ways that children with ME are treated in the UK
We need you to do everything possible to change how every #pwME is treated
We need you to #FundThePlan for #ME

[Dr Jay Watts @Shrink_at_Large]

Dear Policy Exchange,

PIP is not an out-of-work benefit. So why are you trying to score political points by insisting young people on #PIP must work, volunteer or go into training?

PIP enables disabled people to do these things. Cutting it will do the opposite.

Thanks
Dr Watts

[eofallthings @eofallthings]

I cannot tell you how many people promise you that you can create any life you want with enough tenacity and hustle and grit and what most of them really mean is luck, inherited wealth, safety nets, a high income partner, whiteness, and an able body.

[Bryan Johnson @bryan_johnson]

@agy_lena I think about this all the time. So many sad disease states that don’t get dedicated focus and resources. And so much low hanging fruit everywhere.

[#ThereForME @ThereForME_UK]

@wesstreeting @AshleyDalton_MP @paulwaugh @Paula_JKnight @GoreLloyd @LongCovidAdvoc @oonagh_cousins @KatyBruce108 @actionforme @KarenLHargrave Sharon calls on the government to #FundThePlan - her twin sons developed very severe ME after Covid infections 👇

[Steve Topple @MrTopple]

shock as the government does exactly what it was always going to do and refuses to commit more money to research into and treatment of #MEcfs #LongCovid

stop writing letters & calling it activism & stop giving money to charities that want to keep you sick
https://t.co/oCgIyVNKyu

[Janet Dafoe @JanetDafoe]

Please sign !
Prevent forced psychiatric hospitalisation of Very Severe ME patient in Denmark - Sign the Petition! https://t.co/BxmlY00YKD via @Change

[Tom Kindlon @TomKindlon]

Unfortunately for some people with mobility issues, problems being upright (#OrthostaticIntolerance) mean they can't use traditional #wheelchairs or if they do, they can't be upright for long. This looks a interesting idea!

#Disability #Spoonie #MEcfs #Bedbound #SevereME

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[Bridget O'Shea @Bridget_OShea]

I’m so angry with my body for consistently failing to manufacture energy. The deficit I wake up with every day is physically painful. I get desperate for the stamina to do basic things like vacuuming, phone calls, feeding my cats. Feels like I’m dragging a corpse around. #MECFS

[Katy B @KatyBruce108]

We need them to understand the history of ME & how we arrived at this point & the stigma & misconceptions about ME
That BPS FND proponents agenda only does immense irreversible harm to #pwME
That #pwME must never be forced or pressurised to work & the consequences if they are

[Katy B @KatyBruce108]

We urgently need an APPG Chair for #ME who fully understands #ME, it's severity & that it can be fatal
The compete absence of healthcare & support for #pwME & lack of training for Drs & HCPs in ME
Urgent need for funding for biomedical research into ME leading to treatments

[Peter W 🇺🇦 @mediumwhite]

I just don’t get it: #pwME are desperate for research, care and understanding.

Yet the @MEAssociation send a Christmas magazine about nature and gift giving. It is desperate.

This is why trustee renewal is so important.

[#MEAction Scotland @meactionscot]

CONTENT WARNING

Isla was only 18 years old when she died in May. She had been ill with ME since 6, later with POTS & MCAS. Her family say she faced disbelief & neglect from many professionals. Things have to change for ME patients

#VerySevereME #POTS #MCAS Andrew Gwynne MP