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

I was also surprised to see Chew-Graham and Terry Segal there. Chew-Graham was not only involved with FINE but wrote an awful online training for GPs about "CFS" and also in multiple places disseminated inflated estimates of the supposed cost of MUS to the NHS.

 

I share your concern but important to note that the campaign has the support of numerous ME/CFS charities and organisations (listed earlier in thread).

I don’t know if those organisations would have endorsed this letter but it is notable that it has been signed by Charles Shepherd.

I have written to the #ThereForME team with some suggestions, including inviting them to join the forum and this thread.

They have done well to get so much media coverage for their campaign to date but I agree that it would benefit from some input from some some of the knowledgeable veteran advocates on here.

The difficulty for many patients and carers, and particularly for relative newcomers, is knowing who to listen to. Ordinarily, one would think that consulting charities and HCPs would be more reliable than listening to random and often anonymous people on an online forum. But we know that is not necessarily true in this case.

 

I don’t think it should be seen as an unpopular view. I suspect that most of those with experience are worried this is naive re some of these names as we’ve seen what has happened before, this isn’t the first ‘gizza nother chance’ which those doing this means they should be aware it’s not a fool me once but many times over.

I wasn’t as aware of Kane and the medical treatment but the old names and newer people being charmed into being used as useful idiots based on claims the only way forward is compromise with those who don’t intend to compromise because their field is such it’s incompatible and their field they choose isn’t something they will change.

I understand for these people it’s nice to feel things moving faster but not when it’s in the wrong direction/backwards. There’s a reason behind certain things taking time and others that go fast don’t end well. At some point they might have to ask themselves was it really their campaign or were others waiting for someone like this to come along in order to use it as a veil.

Who is actually putting the content underneath this because I can see the people who’ve constructed the MUS and functional that they trapped us with being happy for someone to be the face of ‘they just want to help’ and all those good intentions cliches they are finding hard to sell without such a front.

‘In the name of the patients’ again - if it is so then consult , using a method properly designed to be accessible, those with experience of this level so qualified to speak on what’s been happening on what/who to avoid from bitter experience of ‘trust me’s’. These aren’t turkeys voting Christmas as is what needs to be the case regarding behaviourism vs ME. Full stop.

There are so many more useful names for a proper ‘new dawn’ if we’d all been able to take time to put something good together for what the new needs to be or not be and to get in touch with those we know who might support that. none of us even know where this list was sourced - where and when was it sourced? Is this people they are in discussions with already somewhere? yet we could have had something well written we’d all had time to take to any good GPs or HCPs we have.


Too many old names who will rebrand potentially and nowhere near enough it feeling a breath of fresh air if new specialisms that are needed to build something that would actually help in place of what currently hinders patients.

And the implications are huge. It would be at least another generation that rush move would consign people unnecessarily for. Just when others got to the turning point, even if the next work feels hard and slow.

Some of us have been through this same cycle too much to feel we can survive another one. The risk and consequences lays heaviest on us so expecting us to be at end of someone else taking it fir us at our expense not listening fir whatever reason they’ve been encouraged with feels horrific. And not seeking to hear what happened the last times from those who were there and perhaps dealing with the same characters even. To not be consulted for the experience this needs for the first time to get the right decisions made … hard to put into words.

I’d have been ok with the starting open then building from there for once with the most qualified patients then being consulted. And seeking support from those who could deliver what is needed. But this ready-made list that includes those who only ‘do’ areas that very much are needed to be excluded and the residue washed out from old materials due to the misinformation… I hope that there is a next stage that is much more open and a bit more ressuring that it’s protected from people using them to sign off more of the same but with a bigger gravy train.

 

Doesn't that just make the situation worse?
Why are charities supporting something that may have started off as a well intentioned call for help but, if it gets anywhere, may backfire badly.

 

I thought this campaign was doing really good stuff at first. I’m gutted that it seems that they’re either naïve or problematic

 

I think it's a good idea to call attention to this gap. I don't know if it will have any actual impact but certainly the article in The Times brought awareness to many who would never have heard of it that there's an issue. Certainly some of the signatories are interesting and they would likely have varying ideas about what treatments they would find appropriate. I assume that's a reason, or the reason, that the letter is non-specific on that score. The more specific, the harder it is to get people to agree to and sign. This letter is designed to highlight the need and to say something must happen, and I think it does that effectively. ADD: Could it all go backwards? Of course! I guess any effort could.

 

The more positive argument here is that in getting a broad church to agree you can focus on raising awareness rather than disagreements. If you can then follow up with specific evidence based actions, those that signed on look a bit silly if they roll out their quackery again.

Of course we have no idea how this will pan out. Raising concerns is absolutely valid especially given the history.

 

But what gap, David? (@dave30th)

My instinct was to decline the invitation to sign. I am gradually discovering why.

Presumably we are talking of a specific under-provision for ME/CFS rather than the gaping hole of a UK system spending about a quarter per capita of the USA? So whose fault is it?

Who is in charge of commissioning specific services in the UK such as to obtain a balanced provision? It is not the addressee of the letter, Mr Streeting. It is the signatories themselves - GPs and professors of Primary Care who advocate for more of the same power for GPs. Their request is a disingenuous fraud. If they want full services for ME/CFS all they need to do is ask for them and pay. They can commission appointment of a thousand ME physicians tomorrow.

There are some other signatories, yes, but these are mostly either people who have been spending money on services that look to have no evidence base and may cause harm or physicians who are keen to introduce yet other treatments without an evidence base.

Surely, this has nothing to do with what we have been fighting for for ten years?

The timing tries to pivot on the failure of care for those needing feeding support (the Safety Day). But there is no 'gap' here. The problem is not a gap in service but a deliberate policy to put people with ME/CFS into a 'functional' category (with neither intestinal failure nor lack of mental competence) that means that they are told that keeping them alive with feeding would 'overmedicalise' them.

Patients naturally think that what we need are 'dedicated ME/CFS services'. But I see that as deeply counterproductive. The services we need are accurate diagnosis and explanation from a physician and long term outpatient support. Those are not dedicated, they are what we used to do all the time in routine clinics. The only dedicated options are GET-light, psychotherapy, fringe experimental treatments that look highly unlikely to be safe and effective or deliberate denial of life support.

The longer patients believe that this sort of request will help the longer the problem will continue.

 

But if the task force consists of the same old people, as it almost certainly would, then there is nobody to follow up with evidence based actions and those that signed up will not look silly to themselves. There might well be major disagreements - there are signatories with diametrically opposed views - but pretty much all of them have in common a happiness to ignore evidence and have the chance to do their own thing.

 

I have just received an email response from Karen Hargrave, one of the organisers of the #ThereForME campaign. She told me that she joined the forum and tried to respond to comments on this thread but for some reason it wouldn’t let her post anything. She has therefore asked me to share the following:

“Hi there - this is Karen from #ThereForMe. Some of the comments in your #ThereForMe thread came to my attention. We’re glad to have generated so much conversation! But I wanted to address some of the concerns being raised because I think they’re important.​

These are what seem to be the main issues/questions:​

Signatories on our open letter: I’m going to be completely honest here and say that some of the signatories flagged here came to our attention later than I would have liked. While we may look like a slick operation from the outside, in reality we’re a small team and an enormous effort went into collating the signatures, with many more received than expected. We’re sorry to have created concern or confusion. We’re as in the dark as you are about why some of the individuals you highlighted signed the letter.​

For full transparency: the only people involved in drafting the letter were myself, Dr Binita Kane and some public affairs/comms experts in my networks. We incorporated some input from the ME Association. The signatures were found through Dr Binita Kane’s networks, our networks (including healthcare workers affected by ME/LC who pulled in a lot of colleagues) and the organisations supporting the campaign. For various reasons we decided not to appeal more publicly for signatures. All decisions about the campaign, its messaging and recommendations remain with myself, Emma and Oonagh - and we are going nowhere near GET or the Lightening Process. Oonagh has publicly spoken out about the latter: https://www.bbc.co.uk/news/health-69040592#:~:text=Oonagh Cousins was offered a free place on a course,said it "exploits" people​

Asks in the letter: This was a letter to a high-level politician, which we used to get media pickup. The letter reflects that. My professional background is in policy - these days more on the research/policy side, but I have experience in public affairs/advocacy. A high-level politician (or, let’s be honest, their team) is not going to read a letter any longer than about a page. They are not going to engage beyond very topline asks. This is one of a million things on their desk. The purpose of a letter like this is to get their attention, try to get them in the room and secure a high-level political commitment. Who knows if we’ll succeed - but we think a high-level commitment is needed to set the tone at DHSC that a complete rethink of care is expected. We also wanted to use Patient Safety Day to start building a narrative that shortcomings in ME care are a patient safety issue, which speaks to Labour’s manifesto.​

Consultation with the ME community: We’ve tried our best to make clear that we’re open to feedback and ideas from the ME/Long Covid communities. Our initial policy brief and recommendations were based on a survey we conducted in June - we weren’t as well known then but collected over 300 responses. We are all active on social media. We read comments on our Substack and receive lots of emails about the campaign. We have put together a steering group, made up of the orgs backing the campaign, which will meet for the first time next week. We are in touch with lots of people informally, including other carers for people in the UK with very severe ME.​

We are trying at the moment to make people more aware that we are a small team, all with jobs, health issues and caring commitments. We are having to prioritise and won’t be able to act on everything - and we aren’t always able to respond as quickly as we’d like. But we do read and often discuss feedback. Our campaign has grown a huge amount in less than two months. A lot of the work so far has been reactive but we’re thinking through future plans. How we gather feedback from the community on an ongoing basis is something we’ll consider.​

We’re naive/useful idiots: we hope not! It is correct that we are relative newcomers. We are in touch with people who have been involved in this area for much longer than us. I would say we are all relatively well versed in the history but always open to learning more. Pointing out the history with ME, and linking it to Long Covid, is key for our campaign. We want to build the argument that the reason why there is so little meaningful care for Long Covid is linked to the history of ME and other infection-associated chronic conditions. We want any gains for Long Covid to mean gains for ME.​

There’s no one behind us pulling the strings. We’re a small team building our own path. We’re well aware that one of the blockers to change is individuals with power and influence. We mean it when we say that we want a transformation in care. We won’t accept anything different and we’re aware that may at some point lead to a fightback. In my day job I work on the war in Ukraine and immigration policy - so between Russia and the Far Right I’ve been up against more malign forces. But we don’t want to underestimate this challenge and hope we could draw on your experience if needed.​

Organisations backing the campaign: We’re really very open to any organisation who is interested to back the campaign to do so. There isn’t a formal process, the only real factor is being on board with our asks (set out in the policy brief). We haven’t had the time to reach out to everyone but several orgs have got in touch since we launched the campaign and joined our list. Any others are more than welcome to do so.​

I’ll leave it here because I need to get back to my day job (which I’ve been neglecting!) - but I hope this addresses some of the concerns/questions. We really are open to and take on board feedback. Hopefully you’ll understand we can’t be everywhere all at once - social media is often the best place to reach us!”
​

 

Don’t we need physician-led clinics with specialist nurses, integrated with collaborative research centres, which have inpatient, outpatient patient and home visit facilities for acute and long-term support? Would that not constitute a dedicated ME/CFS service?

 

I remember an advocate in Manchester complaining that there were four sympathetic consultant physicians there seeing ME patients in the late 1990s and early 2000s. But once the CFS/ME services were set up they saw/were allowed see few or no ME patients.

 

I’d like to see something along these lines as more of a focus from patient groups and charities.

I don’t disagree Jonathan. I’m not trying to paint a naive or rosy picture here but did think it worth describing an alternative possibility as the reality is, we don’t know where this is going. Perhaps we can use what we’ve learned from the past and clear asks as you outlined above to influence the direction though? Or at least try to.

 

No. That is what we already have for things like rheumatoid arthritis and multiple sclerosis and it is part and parcel of routine specialty clinics - rheumatology and neurology. If you want accurate diagnosis you want to see a physician who deals with all sorts of diagnoses. Nurses may be allocated to specialist management of specific conditions but as soon as you have off services you immediately get multidisciplinary garbage. I assure you, I have been precisely this happen for attempts to get 'ME services'.

It may be that the crucial step is to get suspected ME/CFS allocated to a speciality. That was discussed at the Government Working Party groups. Someone suggested allocating to rehab. I suggested that rheumatology was more appropriate.

Discussion of the choice of a medical specialty has been split to What medical specialty should look after ME/CFS?

 

Hi Karen, I echo Trish's welcome.

I very much understand that you are heading this up as a new small advocacy group. But if you have a background in policy you will know that in politics you are working in a sea of predators all around wanting their piece of the action.

ME/CFS care is a disaster area but as others have said, well meaning plans to give it special attention have mostly backfired. In the US it got put under women's health and then sank to the bottom of the pile. At the NIH in the US it was given special attention and passed to a unit dealing with alternative medicine and holistic mind/brain care. In the UK we have seen vast expansion of psychological therapies as a response. Although the letter rightly says everyone will stick to NICE guidelines the reality is that in private several of the signatories say they are against that.

And, as indicated above, Mr Streeting isn't the person who commissions these things. It is the responsibility of GP consortia.

I doubt any great harm will come from the publicity, because it will get sidelined by the DoH. But if the DoH says to the signatories 'yes, go ahead and set up a task force' we are back to where we were five years ago, with NICE slipped under the carpet. The current government is pushing for putting even more services under GP control.

 

What is it you are actually wanting, Karen?
My guess is that you want GPs to commission more consultant physician services in departments that can deal with ME/CFS, with specialist nurse support and for those physicians to be in control of long term support and follow-up? And adherence to NICE Guidelines.

 

Also repeating @Trish's welcome, Karen. Glad that you approached @Robert 1973 and fed in some more background to the #ThereforME campaign especially responding to the concerns expressed about some of the signatories.
It's also good to hear you are considering how to gather feedback from the community on an ongoing basis.

 

Can you pass on my thanks to Karen. I've one of those weeks, including today, so it's a short reply. But a quick read through am highly appreciative of her reply