United Kingdom: News from #There for ME

The gatekeeping done by most NHS services is absolutely ludicrous. And the barrier which stops me before I even reach a medical professional.

And yes lack of energy is daft. When I was first ill and up to getting to the surgery it was a huge effort with some impact, maybe thst could have been confused for energy. Then it became an ordeal and I’d end up half collapsed in the waiting room and in a mess for ages after (one getting sent to hospital onky to be told there was nothing wrong with me). Mow for most of decade I’ve been housebound and largely in one room because getting to another has the same huge negative impact as those trips once did. It’s not energy it’s inability and most importantly that negative impact. I find these campaigns so often completely underestimate the more severe end of moderate and beyond.

I think there’s some other useful stuff in there though even if it gets some aspects wrong or underestimates them.
 
I am very lucky to have a kind and helpful GP. She phones me every 3 months and if I need to see a GP she will come and visit me at home. I can get to the surgery if my 79 year old mum drives me in her WAV but my GP understands that my infrequent trips out to spend time in nature are hugely important for my mental well-being, and that if I have to go to the GP surgery that is one fewer time that I am able to go somewhere nice. She also understands that I need to try to organise my life for when my mum is no longer able to care for me.

However, I have experienced unhelpful GPs in the past and I sympathise with the issues others describe.
 
MrMagoo said:
God forbid that the needy, who need help, should get help when they ask for it, from those in a position to help.
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reminds me of why Wallit's choice of the term 'effort' felt so carefully chosen to speak to/stoke this bigotry. 'disabled people have to make an effort too' seems to be the thinking pattern from the 'I also am tired' lot who 'have a hectic life' as if they don't realise that such a request is already factoring in such maximum effort that really it shouldn't be possible at all, but on the basis of controlling all these x factors then it is pulling off the impossible.

I'd go so far as to say that for 'some' (lots)/the most bigoted it is actually 'disabled people have to be seen to be making an effort' so unless you have something that miraculously means you indeed can increase what you offer each time from the last 'compromise' they negotiated, sometimes for the sake of it, then there is something going on in their heads about that too. This one gets hidden in all sorts of nonsense pseudo-phrases like the classic 'don't let your disability become your identity' or 'giving into it'.

I think that it is just pulling the 'reframing' trick that they all try and use on us by just taking it away from it being us, alone, at the centre of it and the conversation becomes one of things they acknowledge as practicalities.
 
Trish said:
The latest Substack article from #ThereForME is provided by Long Covid Advocacy:

The Tiger Who Came to Tea… and stayed​

The severity paradox in ME and Long Covid​

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Good article I think:
some [patient organisations] […] do not actively represent those who are severely affected. In one case we’re aware of, one charity, when asked about this, stated that they didn’t want to scare people.
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In 2013, Alberto Brandolini coined his Law: “The amount of energy needed to refute bullshit is an order of magnitude bigger than that needed to produce it.” The ME health system has been inundated with pseudoscience that leaves Severe ME patients (compared with those more mildly affected) carrying the greatest burden, attempting to clear away misconceptions that negatively impact their care.
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“What other illness gives the least attention to the most affected?”
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(Merryn Croft’s Mum)
 

Commissioning an NHS service for very severe ME​

Perspectives from carers and clinicians​

Article with results of their survey. More details at link.

https://substack.com/@karenlhargrave
KAREN HARGRAVE

The government’s new Delivery Plan for ME, published in July, commits the Department of Health and Social Care, together with NHS England, to “explore whether a specialised service should be prescribed by the Secretary of State for Health for very severe ME/CFS".

Our regular readers will know that this is an issue we’ve been following with interest. 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. Is that set to change? So far, the government’s answer is a solid ‘wait and see’.

We believe that people with the greatest experience supporting people with ME — that is, the family and friends caring for them, and the clinicians supporting them — should be at the heart of the government’s decision making. So, over the past couple of weeks we’ve surveyed some carers and clinicians for their thoughts on whether a service should be commissioned, and if so what it should look like. Here’s what we’ve heard so far.

Our sample is intentionally small. Given the variety of ME scales, we wanted to be certain that all respondents had experience supporting those with very severe ME as per the 2021 NICE Guideline, i.e. “People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.” This meant that we distributed the survey through our networks rather than sharing it openly online. While the sample isn’t huge, we’re confident we’ve captured relevant perspectives. This process highlighted that a clear and consistently applied definition will be needed to provide a threshold for eligibility for a standalone service for very severe ME.

In total, 27 people responded to our survey: 17 carers and 10 clinicians. All but two were based in England. While the Delivery Plan focuses on England, we accepted responses from those across the UK, given the importance of developing a shared UK-wide approach.
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#There for ME has published a lengthy article this morning on their substack focussing on work they have been doing on the needs of the very severe.

The article below is from their mailing list

Headings and conclusion.

Commissioning an NHS service for very severe ME

About our survey

Who is supporting these patients now?

Should the Health Secretary commission a service for very severe ME?

Building trust

What would support from this service look like?

What next?
We hope this can be the start of a conversation about an NHS service for very severe ME. Crucially, we think this needs to focus not just on whether a service is commissioned, but also what a good service would look like and how it can build trust among one of the most neglected groups of patients in the country. Getting this right will be challenging, but the potential gains for patients and their carers are enormous.

If you’re a carer for someone with very severe ME, or a clinician with experience treating very severe ME patients, who we haven’t already consulted: we’d love to hear your views.

Reach out to us as we continue this conversation. This is something we’re keen to do more in-depth research on to ensure our advocacy with decision-makers is rooted in relevant lived experience.

We’ll see you next time.
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For full report see https://substack.com/@karenlhargrave ( added).

Our Substack shares stories from people affected by ME and Long Covid, as well as those working to support them. If you’re interested in writing for us, drop us a line! We want to hear what an NHS that’s #ThereForME means to you and why people (especially those in power) should be listening.

You can follow us on Bluesky, Twitter/X, Instagram and Facebook.
 
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I fear such a service, as a servere patient I consider one of the most important things I do is hiding from the NHS as much as I can. It isn't going to ever diagnose me and all its ever really done is harm me. I want there to be a service available if I loose the ability to digest food to at least try and keep me alive with TPN but beyond that right now the NHS is not safe for people like me and they aren't going to be while they are driven by the likes of BACME.
 
I am afriad this sounds like where most of us were at ten years ago or more. If they want sensible advice they can come and ask for it. We do not have to make the effort of repeating everything we have discussed in detail when it is all here on the threads.

Access to 'off-label and emerging treatments' rings serious alarm bells. That will be anticoagulation and apheresis, saline drips and whatever.
 
That is a terrible position to be in @BrightCandle but I understand that the experiences severe patients have undergone have led you to decide that. It seems to me really important that this view should be heard, that you feel the NHS is unsafe for the very severe and you don't want to engage with it. I think there are many people with ME in that position and it is important that this view is heard and understood.

I am glad that the document recognises that focus needs to be placed on how it ( NHS) " can build trust among one of the most neglected group of patients in the country. " I will be interested to hear ideas on how this can be achieved. Perhaps it will be harder for people who have had ME for a lengthy time and suffered repeated blows. It is not just neglect that we have suffered but many have suffered damage from engaging with the health service and this needs to be taken into account.
 
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Binkie4 said:
That is a terrible position to be in @BrightCandle but I understand that the experiences severe patients have undergone have led you to decide that. It seems to me really important that this view should be heard, that you feel the NHS is unsafe for the very severe and you don't want to engage with it. I think there are many people with ME in that position and it is importantly that this view is heard and understood.

I am glad that the document recognises that focus needs to be placed on how it ( NHS) " can build trust among one of the most neglected group of patients in the country. " I will be interested to hear ideas on how this can be achieved. Perhaps it will be harder for people who have had ME for a lengthy time and suffered repeated blows. It is not just neglect that we have suffered but many have suffered damage from engaging with the health service and this needs to be taken into account.
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@BrightCandle is right

I think it’s just harder for those who have had it a long time because they know what will happen if this sort of thing isn’t somehow a whole new and informed by those who know and have been around for years to know all the old tricks and catches

And they also know that for some it isn’t optional and there isn’t ’a second chance’ if they get hurt and it’s an ‘oops how can we rebuild your trust’ issue from someone who doesn’t get that person had no health left to lose.

If ended up in such a place voluntarily or not I’m not sure you could be more vulnerable because as we know people are neither well enough to leave, move or have anyone else step in and change things if something dodgy is happening

I worry that people are also considering that even if they got something apparently perfect for the next year they need to think of safeguards that make sure it doesn’t just get taken over and turned into a personal kingdom of someone from the bps realm or other not great area and becomes somewhere everyone is desperate to escape being sent. So that oversight is as important as finding the right staff too in order to make sure future staff will be as good and from the right background of biomedical curiosity but also caution and understanding etc
 
Good to see this spelt out in the article (especially the line "Two respondents specifically noted that a service run by BACME clinicians (who are associated with existing approaches) was unlikely to be trusted.")

While the call for a specialist NHS service for very severe ME was unanimous, when asked if they would be likely to use such as a service, all but one of the carers we consulted responded “it depends”. It was clear from the responses that previous experiences of NHS care have led to mistrust in its safety and quality. Most said they would be unsure about accessing a specialist service due to the risk of inappropriate care causing harm to their loved one. Factors that would encourage carers to access specialist care included being provided with clear information about who was involved in the service, including their level of knowledge and experience, and what the service could offer.

Many felt it should be made clear that the service was taking a biomedical approach, building on the latest research and evidence, and was not informed by psychosocial perspectives. Two respondents specifically noted that a service run by BACME clinicians (who are associated with existing approaches) was unlikely to be trusted. Another suggested collaboration with clinicians who are already supporting patients (and trusted by them), particularly those working in the private sector, in the design and delivery of the service.
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[...]
“Make it abundantly clear the model of ME the service is informed by. Have a strong patient and carer advisory panel that has a voice in the planning. Make an unreserved public apology for the very many thousands of lives that have been ruined by the previous psychologically based paradigm.” - Carer for a patient with very severe ME
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(edited to remove some duplication)
 
I am with those who have very deep concerns about any service provided or informed by the old guard. They simply need to be completely and permanently removed from the entire process.

My trust levels in the current medical system on handling ME/CFS are also at rock bottom, effectively zero. I am in my early 60s and if they botch the clinical side of it again – and the signs are not good at this stage, given how much deference and say the BPS club are still getting in the 'new' version – it will be too late for me.

The fact that the likes of BACME were even allowed anywhere near any influence over the new regime, let alone be in the driving seat, tells you everything you need to know.
 
https://www.thereforme.uk/p/campaign-update-28-five-takeaways

With impeccable timing, less than a week before the debate the German government announced that they were putting an eye-watering 500 million Euros into research over the next decade to understand the causes of post-infectious diseases and to develop treatments. The announcement explicitly included ME and Long Covid, which were described as one of the greatest public health challenges of the 21st century.

We weren’t the only ones to notice. It was fantastic seeing MPs referencing Germany’s funding as a gold standard for ambition. Between this and DecodeME’s recent findings, the argument for putting real money into ME research is feeling more compelling than ever.
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“DecodeME has shown the brilliance of UK science, but funding remains far too limited. Germany has pledged €500 million to research with the aim of curing ME by the next decade. We need to be just as ambitious.” Jo Platt (Labour, MP for Leigh and Atherton and chair of the APPG on ME)​
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“Greater funding and support for research are also vital. Germany has pledged €500 million to research ME and find a cure for it. It is time that this country also stepped up and showed the same ambition.” Adam Dance (LibDem, MP for Yeovil)​
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“The University of Edinburgh’s DecodeME project has been a notable exception [...] [which] gives us a solid and compelling foundation for future research. Can the Minister explain what plans are in place for future funding to capitalise on this research?” Tessa Munt (LibDem, MP for Wells and Mendip Hills)​
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“The real cause for hope is Edinburgh University’s DecodeME study, which the chief executive of Action for ME, Sonya Chowdhury, described to me as being like a treasure hunt map with eight crosses where there is a genetic code that matches ME, but where we then have to go and dig up that treasure. That is what is now waiting to happen, and why funding is so important.” Jeremy Hunt (Conservative, MP for Godalming and Ash)​
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New substack article:

Why is Continuing Healthcare funding so hard to access for people with very severe ME?
Reflections from a year-long battle with the NHS

Karen Hargrave's avatar
KAREN HARGRAVE
FEB 10, 2026

Some quotes

For over a year now I’ve been struggling to secure NHS Continuing Healthcare (CHC) funding for my husband James. It’s been a gruelling process, emblematic of the many challenges people with ME face accessing support and ultimately getting the condition taken seriously by the NHS. Today I’m sharing our story, and why I think this is an issue that deserves decision-makers’ attention.
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But there is no doubt in my mind that systemic failures in NHS care for people with ME also played a role. We started off the process at a disadvantage since, unlike most CHC applicants, we didn’t have an NHS specialist in our corner to provide evidence. Given a system where specialist NHS care for people with severe ME is “non-existent”, James is supported by a private specialist. Their detailed letter wasn’t referenced once in our Care Board’s rationale for refusing our appeal. Meanwhile, a low number of NHS interactions was used to evidence a lack of needs.
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Most difficult to read in our most recent rejection was a persistent framing of James’ needs as preferences: that he prefers not to verbalise and that he does not like having people in his room with him. Would they say someone with a severe nut allergy does not like peanut butter? That an asthmatic prefers not to breathe?
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Trish said:
New substack article:

Why is Continuing Healthcare funding so hard to access for people with very severe ME?
Reflections from a year-long battle with the NHS
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Really upsetting to read.

There is one bit I don’t understand. Karen writes:
James was assessed as ineligible for social care funding due to jointly owning a flat, which we could no longer live in due to his disability, but that we were for a long time unable to sell.
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Later she writes:
On a personal level, the fight goes on as we continue with our appeal to the next stage. I’ve recently managed to sell our flat, meaning that social care funding for James’ care may soon kick in.
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I don’t understand why selling the flat would mean that social care funding could kick in. It’s it’s means-tested, would the money they got for the flat not count against getting social care funding?

This is not a criticism of Karen or what she’s written, I’m just trying to understand how it works – not least for my own benefit. The whole welfare system for people with sickness and disabilities is so difficult to navigate, and far more so for people with ME/CFS.
 
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