#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,"

 

Moved posts

My husband is bedbound with ME at 37. I grieve for the life we had
https://www.thetimes.com/article/31...5?shareToken=bf68a823a1f63a12b98f88bbd3fb3010
https://archive.is/7EI5j

Karen Hargrave is campaigning for better care for people with myalgic encephalomyelitis after her husband’s life was ‘decimated’ by the debilitating disease that has no treatment and no cure

Herring, 37, was a successful marathon-running civil servant “in the prime of his life” before he developed severe ME triggered by a Covid infection. He now struggles to speak, can’t eat solid food, is on the highest level of disability benefits, and can only get out of bed once a day in a wheelchair to go to the bathroom.
...
She has launched a campaign, called #ThereForME, which is demanding a “transformation” in NHS care, as well as highlighting the link between ME and long Covid, which share striking similarities in terms of symptoms and being triggered by viral infections.

Poor NHS care for ME has been highlighted at the inquest for Maeve Boothby O’Neill, who died of ME in 2021, aged 27. The inquest, held over the past two weeks at Exeter coroner’s court, is examining whether different clinical decisions could have saved her. The coroner’s findings will be delivered on Friday, and campaigners hope it will mark a “turning point” in the way ME patients are treated.
...
A new report by #ThereForME highlights how failings in NHS care are the norm. A survey involving 328 patients found that not a single one with very severe ME felt the NHS “had been there for them”. Multiple patients described traumatic experiences in hospital, with some saying they would “rather die at home” than have to seek NHS care again, even if experiencing life-threatening symptoms.

There are no treatments for ME, and no specialist inpatient NHS services. An open letter signed by 2,624 patients and carers, sent this week to Wes Streeting, the health secretary, calls for the government to commit £100 million a year to funding medical research into ME and long Covid. It also calls for the appointment of a minister for long Covid and ME, a new NHS treatment protocol for severely ill patients, and action to improve at-home care.
...
A Department of Health and Social Care spokesperson said: “This government will ensure that patients receive the care they deserve.

“We are committed to improving the care and support for people with myalgic encephalomyelitis and chronic fatigue syndrome. We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.

“The government welcomes applications for high-quality research to understand the causes, consequences and treatment of ME/CFS and long Covid and we are actively exploring next steps for research in this area.”​

Hollow words from the government. There are literally headlines going back at least 20 years saying that. They never deliver a damn thing. In fact they did worse since the first headline saying this was published.

 

Profiled in the above article:

Shared by Sean O'Neill:

 

Article in the Times today ( 6.17 pm) about #ThereForME campaign, by Eleanor Hayward, health correspondent.


https://www.thetimes.com/uk/healthc...n-running-husband-mute-and-bedbound-76jpzfzk6
(paywalled)

 

I think this is a free link from Sean:
https://t.co/fyEG597XLF

 

Ref- above post #7. The article also refers to Maeve Boothby O'Neill's inquest which it says examines whether different clinical decisions could have saved her life. It also draws attention to the fact that the coroner's findings will be delivered on Friday.


Am pleased to see that news of the coroner announcing her findings on Fri should reach a wider group including the long covid community. Let's hope her findings are strong and clear.

 

The Times is giving lots of attention to this story and has posted it very visibly in today's Times.

In hard copy of the Times today, on front page there is small para, title heavily bolded "Lives blighted by ME", linking to almost full page on p9 " Couple 'decimated' by ME seek a revolution in care".
I don't think I remember such a torrent of articles on ME. I hope other news outlets are picking this up.

 

I think this is a really key paragraph - particularly in context with the previous weeks of reporting there has been for the inquest into Maeve's death:

It isn't a small number of people with very severe ME to get a response from given the level of debility (and level of care that means for carers who are often their family)

I hope that those who know less about this read this without caveats to realise this genuinely does say that we are talking about rule and not 'the exception' potentially on how bad things are if you are on the receiving end of what actually ends up happening.

 

Tweet put out Mon at 15:49.

"LC/ME hivemind - we need your help! We’re looking for an established scientist who has worked on ME and/or Long Covid to write a piece for #ThereForME. We want to know how you would spend £100m annual biomedical funding over 5 years. Would need a draft by COB [close of business] Weds."

 

Was that not a bit...unrealistic? Established scientists are probably quite busy.

I'd be concerned about anyone offering that much money on that timescale, with the state of research as it is—there don't seem to be a lot of big projects sitting there waiting for funding to become available. It'd be hard not to end up throwing money at poorly-conceived research just so you could say you'd spent it.

 

Yeah, I know – I just think it might not do a lot for their credibility to suggest switching on a huge funding stream before any structures are set up or projects are ready to go.

 

I don't think this is particularly helpful at this early stage. We need to be asking for a collaborative structured solution to address the capacity and capability issue in the field (and start to resolve the systemic discrimination in the MRC review process issue that's killed ME research).
In terms of specific topics we already have the JLA PSP and just need to refine that in the context of the US roadmap into research questions and form a research agenda

 

Shaun Lintern (Health Editor at the Sunday Times) posted a share link to an article featuring Oonagh Cousins that references this campaign.

Are long Covid and ME linked? An Olympic rower is trying to find out

https://bsky.app/profile/shaunlintern.bsky.social/post/3kzt3mhxhbd2a