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

Sly Saint said:
One jumped out:
"Anna Gregorowki - Consultant Nurse and BACME Chair, London, University College London Hospital".

To my mind the list is another indication of how irrelevant BACME are now; certainly not deserving of being a primary source of information about pwME and ME.
Click to expand...

Yes, her name and Sarah Tyson both jumped out.
Did anyone spot Pete Gladwell?
 
Gladwell's name is not there.

Dolphin said:
Most of the signatories I think haven’t signed previous David Tuller letters. It could be interesting to see how many might in future.
Click to expand...

I think this is a very different group of people, mostly GPs, rehabilitationists, physios and psychologists, including at least one advocate of the Lightning Process.

There is something slightly surreal about it. I was asked via a third party by Binita Kane and a ThereForME person if I would sign. I wonder if others who have come up against the complexity of the politics also said no thanks.

It says We’re publishing the full letter and signatures below - if you ever wanted a list of healthcare workers who are #ThereForME, this is it!

Mmm.
 
This strikes me as one of these things that is very well-meaning but could easily backfire.

As has been previously said Chew-Graham was involved in the utterly dreadful FINE. Segal is, I think, involved with the UCL paediatric clinic with which many carers of children with ME have had problems. There are a couple of BACME names like McKeever. So, what did they sign up to?
Acknowledge, from the very top of government, that gaps in NHS services for ME are resulting in serious patient safety concerns, and commit to taking action.

Work with us to immediately convene an ME Clinical Taskforce to provide emergency specialist guidance in cases where patients are hospitalised, and drive forwards improvements in NHS treatment and care (including managing risks of malnutrition).

Commit that this government will hold NHS Trusts and Integrated Care Boards accountable for implementing guidance from NICE on diagnosing and managing ME (NG206), recognising that a failure to do so risks unsafe care.
Click to expand...
There is very little here that a rehabilitationist would disagree with. "Gaps" implies the current model is fine and just needs to be better resourced. The letter doesn't say what should be in the "emergency specialist guidance". The letter seems to be deliberately constructed to be something that almost everyone could agree on but I suspect that Dr Kane's idea of specialist provision (which seems to have included anticoagulants in the past) and the ideas of some of the signatories would diverge quite markedly. If you're going to set out a list of demands to a Government minister you should be very clear indeed about what you actually want to occur. What we need is not better-resourced existing services but an entirely new model of supportive provision - and the list of signatories for that would, I suspect, be quite different.
There is little access to truly specialist ME care or treatment within the NHS
Click to expand...
This implies that there is specialist treatment. While I'm sure we would all like to see services capable of supporting severe & very severe pwME the extension of the current service model to include us (through, say, home visits of rehabilitationists) would be deeply counterproductive.
 
It’s probably not that surprising in some ways. A lot of the ThereForME people are relatively new to this area.

When I was first ill a decade ago I heard a little bit about the controversies but wasn’t well versed in the history, hadn’t experienced the impacts myself and have a lifetime of trust in the NHS and the professionals within it. I was familiar with organisational issues but didn’t want to get bogged down in politics and thought “look, the NHS has a way of working, it’s not always perfect but…”.

My default position was to not jump in questioning motives but wanted to focus on practical solutions to my problems. I prefer to see that people’s intentions are good and that even if steps along the way are a bit off, it’s better to work with people than alienate them.

I see some of that here. I hope people don’t get burnt by it because there is an opportunity here for real improvements and change. I still believe there’s little point in getting involved in blame, but that doesn’t mean we should ignore the reasons for the failures of the last couple of decades.
 
Nightsong said:
If you're going to set out a list of demands to a Government minister you should be very clear indeed about what you actually want to occur. What we need is not better-resourced existing services but an entirely new model of supportive provision - and the list of signatories for that would, I suspect, be quite different.
Click to expand...
Well put. I wonder if a push for reform rather the usual ‘give us more money’ message would actually be better received by ministers too.
 
hotblack said:
Well put. I wonder if a push for reform rather the usual ‘give us more money’ message would actually be better received by ministers too.
Click to expand...

I am afraid that is unlikely. The ministers involved, including Starmer, have indicated very clearly that there have swallowed the primary care story that we need lots of access to GPs and physios and to stop people going to hospitals. They will love to set up an ME Clinical Taskforce run by professors of general practice and assessed by PROMS. They have also indicated they are very open to outsourcing to private services where you might get all sorts of interesting treatments. ME/CFS might be the flagship community care programme.
 
Jonathan Edwards said:
I am afraid that is unlikely. The ministers involved, including Starmer, have indicated very clearly that there have swallowed the primary care story that we need lots of access to GPs and physios and to stop people going to hospitals. They will love to set up an ME Clinical Taskforce run by professors of general practice and assessed by PROMS. They have also indicated they are very open to outsourcing to private services where you might get all sorts of interesting treatments. ME/CFS might be the flagship community care programme.
Click to expand...
I share many of your concerns, but hope you are wrong. And I do think making a strong case that they would be throwing good money after bad could have an impact.
 
Nightsong said:
This strikes me as one of these things that is very well-meaning but could easily backfire.

As has been previously said Chew-Graham was involved in the utterly dreadful FINE. Segal is, I think, involved with the UCL paediatric clinic with which many carers of children with ME have had problems. There are a couple of BACME names like McKeever. So, what did they sign up to?

There is very little here that a rehabilitationist would disagree with. "Gaps" implies the current model is fine and just needs to be better resourced. The letter doesn't say what should be in the "emergency specialist guidance". The letter seems to be deliberately constructed to be something that almost everyone could agree on but I suspect that Dr Kane's idea of specialist provision (which seems to have included anticoagulants in the past) and the ideas of some of the signatories would diverge quite markedly. If you're going to set out a list of demands to a Government minister you should be very clear indeed about what you actually want to occur. What we need is not better-resourced existing services but an entirely new model of supportive provision - and the list of signatories for that would, I suspect, be quite different.

This implies that there is specialist treatment. While I'm sure we would all like to see services capable of supporting severe & very severe pwME the extension of the current service model to include us (through, say, home visits of rehabilitationists) would be deeply counterproductive.
Click to expand...
Agreed. I'm worried that I'm seeing people who would need to change their model on here and wondering whether they were potentially signing thinking they would offer some/all of these additional things - which would really not be a good idea. I guess the phrase is part of the problem. Enough of these have signed that I can't believe it is a moment of revelation and so can only conclude it is leaving that dangerous room for more of the problematic approach.
 
Trial By Error: UK Health Care Professionals Appeal to Health Secretary for Quick Action on Poor ME Care

"Tuesday, September 17th, was World Patient Safety Day. (I didn’t know that either.) In the UK, more than 200 physicians, nurses and other health care providers and professionals marked the occasion by issuing an appeal—in the form of a letter to Wes Streeting, Secretary of State for Health and Social Care since–about the dire state of care for ME patients within the National Health Service. The letter highlighted in particular the plight of patients with severe ME."

https://virology.ws/2024/09/19/tria...h-secretary-for-quick-action-on-poor-me-care/
 
I realise that this is going to be an unpopular post, but I have serious concerns about this campaign. It has the potential to affect all the lives of those of us with ME in the UK and yet is clearly not being conducted in a collaborative way, but by a couple of long COVID patients' carers - presumably quite new to advocacy in this space - and a doctor whose dangerous use of "triple therapy" (a combination of anticoagulation with two antiplatelet agents which she was reported to have used in children), if it indeed continues, could well result in the deaths of pwME.

My first question for the campaigners would be this: does Dr Kane continue to advocate for the usage of, or prescribe, unevidenced and potentially dangerous therapies for ME/LC on the spurious basis that it is some kind of coagulopathy? If so, why are you associated with her?

As I said above my concerns are compounded by the names of some of the signatories; I think it particularly worthy of note that the second name on the apparently unordered & unsorted list - the name directly after Kane's - is that of Chew-Graham. I don't need to explain this background to S4MEers but in the event that this thread comes to the attention of someone from this campaign, I'll explain further:

Chew-Graham was a co-author of the notorious FINE trial which actively promoted highly stigmatising attitudes. The patient manual for FINE was a morass of the worst kind of misinformation, and included such unevidenced gems as attributing post-exertional myalgia to delayed onset muscle soreness and deconditioning and promoted their "vicious circle of CFS" model. They advocated "the right thoughts for recovery", claimed that "unhelpful behaviour can maintain the problem"; all the usual stuff.

But that wasn't the worst of it. She was also a co-author of a qualitative study that drew on the experiences of the nurses & patients participating in the FINE trial, entitled "Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis". In addition to being so blatantly incompetent that they misstated the name of our condition in the title of their study it became infamous for this quote from one of the three supervisors conducting the intervention:
‘There have been one or two times where I have been worried because they have got angry at the patients. . . that anger has been communicated to the patients. Their frustration has reached the point where they sort of boiled over… there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, “The bastards don’t want to get better”. . . I think it’s a difficult thing for all therapists and I think basically over the time you just basically learn to cope with it, and but they have not had time.’ (Supervisor)
Click to expand...
And there you have it. The fact that their ludicrous and stigmatising model failed to work wasn't their fault; no, it was the fault of the poor pwME, the "bastards" who didn't "want to get better".

As far as I am aware Chew-Graham has never apologised for her involvement in these methodologically and ethically deficient studies, for her involvement in something that recruited such a moral troglodyte as this "supervisor" - assuming the supervisor was not her or one or her co-authors - or for her role in promoting a model that leads directly to such stigmatising attitudes.

Why was hers the second name on this unsorted list after Kane? Did she have any role in preparing the letter or the list of demands made to Streeting? Why is someone with her views involved in ME advocacy efforts?

Other signatories are equally concerning. Gregorowski and Segal were two of the three authors of a 2019 review that stated falsely that the LP "has been shown to be effective when added to medical care".

Do these campaigners agree with such views? Do they believe that those who recommend or even advocate for the LP have our best interests at heart? If not, why were they invited to sign?

ME advocacy is best conducted in collaboration with experienced pwME who have knowledge of the issues and personalities; the devil is in the details and there are potential pitfalls that are not remotely obvious. It is not only possible but relatively easy to have the best of intentions and yet do something that could be highly counterproductive.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom