#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

"#ThereForME is a campaign founded by Karen and Emma, two carers for partners with very severe ME/Long Covid. #ThereForME is calling for an NHS that's there for people with ME and Long Covid."

https://linktr.ee/ThereForME (Provides many links, including to an executive summary of the "Building an NHS that’s there for Long Covid and ME" campaign, the full report, open letter and more.)


Why we need an NHS that’s #ThereForME

Each story of a patient with Long Covid or ME, like ours, is an individual tragedy. Taken together, they speak to a vast loss to the UK’s society and economy. The new Labour government will face a vast array of pressing challenges in the months and years ahead. But this is an issue the UK can’t afford to ignore with a low-growth economy and record numbers out of work due to long-term illness.

A recent study found that people with Long Covid are three times more likely to give up work. Not least because there is very little meaningful help available for debilitating symptoms including (often extreme) cognitive dysfunction and the exacerbation of symptoms following any kind of exertion.

As patients and carers, we need an NHS that’s #ThereForME and Long Covid. But, truth be told, so does the new government – especially if they are serious about getting the UK economy moving again.

https://thereforme.substack.com/p/welcome-to-thereforme

 

Yes, it looks very good to me. I will sign it, send it to friends and family, share it on social media and write to my MP (again).

Shame S4ME weren’t asked to support it (I assume) but good to see organisations speaking in harmony on sensible advocacy.

 

The first I saw of this campaign was on social media yesterday.

 

I've written to my new MP too, via https://docs.google.com/document/d/...UwPiOEPaS3xXz3UBg/edit#heading=h.hi2k3521177a

I changed it slightly to read:

"Dear Ben Maguire,

Congratulations on your recent election as MP for North Cornwall. I am writing to you as a constituent.

Since 1995 I have been affected by ME/CFS. It has seriously affected my ability to work and thus my income, which is better now that I am retired! People who are affected before they have a chance to work are even worse off.

I attempted suicide in 1996, as my income was so depleted that I was in debt, all the medications I tried were useless, I could no longer enjoy anything at all and was increasingly ill. I spent a month in hospital, mostly in a specialist ward in London, with liver and kidney failure, which both recovered.

Despite this, I obtained Bachelor's and Masters degrees in science from the Open University.

I spent the rest of my 'working' life trying to make enough money to survive, despite my illness, selling plants from home, and then doing a small amount of science work. I was never able to make much money due to the illness.

Patients with Long Covid and myalgic encephalomyelitis (ME, sometimes referred to as ME/CFS – chronic fatigue syndrome) have long been dismissed and overlooked, facing decades of inadequate care and insufficient research funding. A significant proportion of Long Covid patients - by one estimate approximately half - meet the diagnostic criteria for ME.

I am writing to share with you a new report published as part of the #ThereForME campaign and endorsed by 15 organisations supporting people with ME/Long Covid. #ThereForME is a campaign led by patients and carers, calling for an NHS that’s there for people with ME and Long Covid. The policy brief is available here: https://linktr.ee/ThereForME

The policy brief brings together new data from over 300 patients and carers affected by Long Covid and ME in the UK. Two thirds said that the NHS has not been there for them when they needed it.
We are calling for a transformation in care for people with Long Covid and ME, including recommendations for the government to:

Commit to an NHS that is there for people with ME and Long Covid, putting this into action by prioritising publication of the cross-government delivery plan on ME/CFS.
Pledge at least £100 million annual funding for biomedical research. We’re calling on the government to do everything it can to leverage the UK’s science and technology expertise to accelerate treatments.
Do more with the tools we already have e.g. implementing the 2021 NICE Guidelines for ME/CFS and supporting access to technology-enabled solutions (e.g. wearables for symptom monitoring and management).

As my MP, I’m calling on you to commit to using your role in parliament to push for a transformation in care for people with Long Covid and ME, highlighting the needs of constituents like me and the policy brief’s recommendations.
Actions you can take to be #ThereForME in parliament include:

Sharing the policy brief and #ThereForME campaign on social media to show your support, raising awareness of the issue and solutions (https://linktr.ee/ThereForME)
Joining the APPG on ME after Summer Recess (for details please contact policy@actionforme.org.uk).
Letting the Secretary of State know this issue matters to you.
Raising this matter in parliament, for instance through questions or in relevant debates.


Labour has been elected on a promise to transform a broken healthcare system, building an NHS that is fit for the future. To achieve this, Labour must deliver for people suffering with Long Covid and ME.

I would value your support in holding the new government to account and encouraging them to implement the policy brief's recommendations.

Thank you in advance.

Yours sincerely,"