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New minutes from September 10 https://appgme.co.uk/wp-content/uploads/2025/09/2025-09-10-APPG-Minutes.pdf "SC provided an update from DHSC. While the APPG/members/some stakeholders* feel there are many shortfalls in the Plan, the focus must be on delivering all the actions identified while...

With the NICE guidelines definition & e module, they’ve blended severe and very severe now into a very low functioning / helpless category & so the NHS only focusing on the very severe is facilitated. The DHSC have said they're contemplating a service for the very severe,( 3 years was not...

Interesting I have no science background. What a worthy use of your skills, & ofcourse sad if treatment is still far off for the many thousands affected. I think at least they can say they have resources to push things through as fast as is possible. The blood test is less about diagnosis and...

I wish they’d ask on what grounds is it decided that dementia requires £160m / year to make progress towards treatments & ME/CFS requires around £1m. I note in the news dementia is on the verge of a blood test, so state investment of around £800m (a guess) over 15 -20 years has paid off. “The...

Is that a yes or a no? Good questioning again. Peter white was pointing out that department was actually the home of the Medical research council. MPs should be given straight answers. If we all thought the trifling amounts to date + a showcase along the lines of CMRC conference+ long covid...

Thanks, I submitted this question to Action for ME for their AGM too but it seems there’s not really a lot of point, without funding and impetus anyway.

https://meassociation.org.uk/2025/09/ask-your-mp-to-sign-the-early-day-motion/

In addition to the six sponsors , 5 The Liberal Democrat’s, these MPs have signed to support the motion so far . Smith, Cat Labour Signed on 9 September 2025 Lancaster and Wyre Savage, Dr Roz Liberal Democrat Signed on 9 September 2025 South Cotswolds Dyke, Sarah Liberal Democrat Signed on 9...

. Fair point, although she /or an official chose to send a letter to The MEA on May 12, that was a complete brush off to the community that re used the offensive phrase that “in worst cases people had felt unseen” or whatever. I see the long Covid APPG have asked Ashley Dalton to attend as one...

This EDM has been tabled by Morrison, Tom Liberal Democrat, with most of the sponsors also The Liberal Democrat’s. I cannot see his , name on the APPG “who are we”, unless new, so this might be an independent Liberal Democrat’s initiative vs the APPG. But I can’t see the name of The Liberal...

Yes it’s applying pressure and raising awareness - both worthwhile in the current unacceptable circumstances

New EDM https://edm.parliament.uk/early-day-motion/64248/final-delivery-plan-on-myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs Sep 100% +• edm.parliament.uk Motion text “That this House welcomes the publication by the Department of Health and Social Care of the Final Delivery Plan...

I do have sympathy for Ashley daltons own ill health but honestly these replies make me think certain people should not be anywhere near healthcare in any way.

This is not atypical: "Physically, singing hurts because of my condition. I am very sensitive to sound, which can trigger profound head pain, as well as a flare up of all my symptoms. If I over-exert myself or am exposed to high levels of sound, I can experience seizures and even periodic...

NHS England is responsible for allocating funding to integrated care boards, which in turn are responsible for commissioning specialist myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) services that meet the needs of their population, subject to local prioritisation and funding The...

The commissioning guidance for long covid afaiu is physician-led services and one stop shops to cover all medical needs. I think that long covid services also have an oversight committee. Imagine that for ME/CFS - a Dr for m.e & OI /POTS & therapist support all covered in one medical clinic &...

This happened in my area regarding ME/CFS. The clinic was only funded for a part-time post to cover 4 counties. Not surprisingly it either had 1 year+ waiting lists or shut to new people completely. It is basically why I am bedbound. The specialist dr was actually good but I never got to see...

It's when the figures are put alongside others that they scream out ridiculous, which is why I'd like to see a minister having to do that and still carry on with the "we are doing our job & duty to advcance research properly & fairly, as your government and holders of the purse for medical...

Dear Wes, Concerns Regarding ME/CFS Strategy in the Final Delivery Plan As Members of Parliament and Champions for Action for ME, we are writing to express our collective concern about the absence of a strategic approach to biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue...

This is specific to NIHR. However, Is there a certain code for these questions? Could they be asked to quantify the amounts given to research into dementia, Parkinson’s and ME/CFS over the past 5 years, (presumably around £540m, £75m & about £6m): & explain how the small gestures made in the...