Top Tweets for #FUNDtheplan
@NHSE_WTE The ten year health plan for everyone except the 404,000 who have ME/CFS.
That’s like excluding the entire population of Bristol.
That would never be accepted, so why is it acceptable to ignore ME/CFS?
#FundThePlan #ME
December 24th. Thank you for being #ThereForME, @rozzybarrett!
Rosie is a carer to her sister Alice and was featured this year by BBC Spotlight championing our #FundThePlan campaign. Nominated by Lauren. ✨
I feel like we should maybe redo our push to Wes Doulton and Ashley Streeting with our videos to #fundtheplan
@ThereForME_UK
#MECFS
@wesstreeting @AshleyDalton_MP
#pwME have done everything we could to explain why it's critical for you to #FundThePlan for #ME
You declined & instead of providing funding for biomedical #ME research this👇is being funded
Provide the means for #pwME to recover, then we can work
In 3weeks I’ll be 31.
I have never lived away from home, never had a relationship, never been out to work.
I’ve not been on holiday with friends, or finished my education, or put down a deposit.
I haven’t been out alone in 16years.
I have #SevereME
I will never stop trying.
For anyone who's in any doubt about why it couldn't be more important that biomedical research into #ME & #LongCovid is funded, please, listen to Vlad.
@AshleyDalton_MP @wesstreeting #FundThePlan
@AshleyDalton_MP @wesstreeting
It would be so good if you could both go to @magnetoJJ's photo exhibition which shows the lives of #pwME & perhaps seeing these powerful images may help you to understand why you really must #FundThePlan for #ME
Details 👇
Come along to 'Lives We Cannot Live', a ground-breaking new photo exhibition by Jeremy Jeffs, featuring photos and stories of people with ME - open now!
Open until Sunday 28th Sept
11am–6pm daily
Oxo Gallery
Free entry
https://t.co/6RThYQbfTh
#MECFS #pwME #LivesWeCannotLive
‘People with very severe #ME have a shockingly poor quality of life. Yet at present there are no specialist NHS services anywhere in the country equipped to meet their needs.’
#FundThePlan
Today's #ThereForME blog shares findings from a mini survey.
We asked carers and clinicians with experience supporting people with v severe ME whether the Health Secretary should commission a service for v severe ME - and if so, what it should look like.
Link in next post 👇
@wesstreeting @AshleyDalton_MP
This is one of many reason why it's imperative that you #FundThePlan for #ME because
No funding for biomedical research➡️No treatments➡️#pwME Remain too sick to work
Every #pwME desperately needs you to understand this & #FundThePlan
#MEAwarenessHour
🙏🙏🙏 @JohnMilneLD and all the Parliamentary Champions working with @actionforme for sending this letter
@DHSCgovuk
@AshleyDalton_MP
@wesstreeting
#FundThePlan
✍️ Today I've joined Action for ME in writing to @wesstreeting on the chronic underfunding of ME/CFS research. Despite the prevalence of these conditions, they are still poorly understood and lack effective treatment.
#ThinkSepsis
30.8.2013 blue light admission - a frightening experience for family (I remember very little) - but a complete change of life for all of us ➡️ #MyalgicEncephalomyelitis
No drugs
No cure
Hard to recover without treatment...
#FundThePlan
eg
https://t.co/e2719wTblX
Anniversary- 26June2001
I caught a Virus
#PostViral
#ChronicFatigueSyndrome
I am one of the lucky ones who improved after #PVFS
Shame #sepsis interfered 30Aug2013
#PostSepsis
#MyalgicEncephalomyelitis
20 years experience
8 yrs managing new normal
https://t.co/pdd8XIUv8x…
The UK Government has significantly underfunded ME/CFS research relative to its burden over a long time period
There are no drugs
There is no cure
Hard to recover without treatment...
@AshleyDalton_MP
@wesstreeting @DHSCgovuk
@DWPgovuk
#MECFS
#FundThePlan
Credit: @wecrunchme
Another pwME is being mistreated by an NHS hospital. Katie’s looking for resources and experiences of people no longer needing tube feeding. Please help if you can. #myalgicencephalomyelitis #millionsmissing #fundtheplan
@rachelleese84 I think I’d like to gather as many resources as I can whilst there are no doctors available to help advocate for me and explain things and it would be great if people could share what they know. Also experiences of people tube fed who no longer need to be.
@PaulRKeeble Well the thalidomide victims in the UK got £80 million in compensation between 400 of them, if there are 400,000 people with ME in the UK, then that gives you an idea of the sort of funding that the gov should be looking at. #FundThePlan.
@wesstreeting failure to #FundThePlan means #pwME & their carers continue to ask themselves is it safer to stay home rather than go to hospital? If we go, will we be harmed with inappropriate treatment? Will carers be accused of fabricated illness? Please. This. Must. End. Now.
I’m sorry that when you need to seek medical care for a serious decline you have to think it through so carefully, will your loved one and you be listened to? Helped? Treated? Will it save their life or be the end of it? Is it safer to go to hospital or stay home?
Thinking of SJ today (Sarah Jane Lewis) on #severemeday2025
SJ died by suicide last awareness day, unable to continue living alone with little outside contact.
This is the real cost of deciding not to #fundtheplan leaving people living in horrific circumstances few choices.
The lack of any real action and funding in the Delivery Plan has aged like milk. Suddenly 404k patients are being abused and there is no plan to fix it and no research funding has been allocated for the disease. #DecodeME #pwme #deliveryplan #fundtheplan
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