The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)

Sigh. It's all coming together in the worst possible way. This links with other discussions we've had
The ELAROS app for LC is the digtal platform developed with Prof Manoj Sivan who is leading this Heritage project and is prof of rehab medicine.
The BACME ME/CFS guide for therapists is intended to integrate with and use:
The MEA ME/CFS Tyson led clinical assessment toolkit and the MEA app to be released in December.
It's like it's all been planned to culminate in this whole disastrous synchrony between Sivan, BACME and the MEA to stitch us up with totally unsuitable therapist led clinics and apps.
 
JellyBabyKid said:
Sorry, I don't get what you mean?
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I guess I am saying that if we want to get help from other organisations or wherever then a single document pointing out the hole on the bottom of the one basket makes life a bit simpler. The BACME document makes explicit how big that hole is - how groundless their approach is. If all the others are mucking in with that then we don't need to fight on several fronts.
 
It may well be a waste of time, but they're going to use the outcomes from this as "evidence" for the purposes of service commissioning. They've picked the players; does anyone doubt that the outcome will be a psychobehavioural/rehabiliationist one?

Is there anyone among the charities and patient advocacy groups actually objecting to the psychobehavioural NHS clinics & the prevailing service model - or are they all signalling behind closed doors that they are fine with it? Did any of them even raise it during the DHSC process? Have any of them ever publicly challenged it? (Years ago MEA used to make occasional noises about clinics needing to be "physician-led" but never publicly challenged what they were otherwise doing, and to this day they maintain a directory of the clinics on their website. And Charles Shepherd even recently complained about the clinics losing LC-specific funding; why, when they are doing no good and causing harm?)
 
Jonathan Edwards said:
I guess I am saying that if we want to get help from other organisations or wherever then a single document pointing out the hole on the bottom of the one basket makes life a bit simpler. The BACME document makes explicit how big that hole is - how groundless their approach is. If all the others are mucking in with that then we don't need to fight on several fronts.
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Ah, I see.. thanks for clarifying.
 
Nightsong said:
It may well be a waste of time, but they're going to use the outcomes from this as "evidence" for the purposes of service commissioning. They've picked the players; does anyone doubt that the outcome will be a psychobehavioural/rehabiliationist one?
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Except that they will probably find not much difference between the arms and since we don't know if any of them work they will be open to even more criticism than PACE. The criticism of PACE stuck in the end. NICE believed it. The goalposts have moved but I suspect people will realise just how useless the results of HERITAGE will be. Moreover, I wouldn't be surprised if there was infighting between the people favouring the different models. And if the current trend to close down Long Covid clinics continues then the obvious money saver would be to do the same for ME/CFS if they can't find any difference.

Nightsong said:
Is there anyone among the charities and patient advocacy groups actually objecting to the psychobehavioural NHS clinics & the prevailing service model - or are they all signalling behind closed doors that they are fine with it? Did any of them even raise it during the DHSC process? Have any of them ever publicly challenged it?
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I agree that this is unclear. But AfME have forged a very strong partnership with Chris Ponting and Chris does not mince his words when criticising the current situation. He may not focus on the number of angels that can dance on a GET pinhead but I shouldn't think he is too impressed by a 'dysregulation model' that means nothing at all.

I am hoping to explore this exact issue over the next couple of months. I am off to Argentina for a bit but it will be my priority on return.
 
Eleanor said:
There's one thread to pull that might unravel it - the fact that it's a waste of money, at a time when govt is looking for yet more cuts.
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I suspect they’ve covered that by the line suggesting experts training’other staff’ ie rehab can be imposed via community rehab staff getting 2-day course to claim they are now ‘cfs version’

Bacme staff get to keep their position even if there is no clinics specific to cfs. Just another mus thing.

The whole thing has full circles by taking the rehab into general pop on basis of the dodgy cfs stuff of old abc then when it’s debunked for us shoving us back into ‘it’s just what works for everyone’

I see this as a manifesto working out how they can make what they do ally with what they think decision makers will want to be seen to offer given current climate and other initiatives (slotting into developments, knowing where pockets of funding will be based on ‘looking to achieve’) , not what works. Then provide enough impenetrable, doesn’t square circles guff to justify doing it or at least try and muddy the waters of nice making it clear doing so is against the spirit of the guidelines. Deniability or delay, delay and all ?
 
Jonathan Edwards said:
If I remember correctly the recent BACME therapy protocol document we have seen has no medics as authors. Yet McKeever is clearly active in BACME.
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I'm suprised she is not listed as an author because I believe she is one of the more active members of BACME and a lot of this dysrgulation stuff has come from the Yorkshire Fatigue Clinic, where she works. She is herself a GP with special interest.
 
Jonathan Edwards said:
Except that they will probably find not much difference between the arms and since we don't know if any of them work they will be open to even more criticism than PACE. The criticism of PACE stuck in the end. NICE believed it. The goalposts have moved but I suspect people will realise just how useless the results of HERITAGE will be. Moreover, I wouldn't be surprised if there was infighting between the people favouring the different models. And if the current trend to close down Long Covid clinics continues then the obvious money saver would be to do the same for ME/CFS if they can't find any difference.
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Something I have thought for some time would be useful is if a supportive ME organisation brought together a group of people, including someone who understands the weeds of the NHS service commissioning processes, to thrash out what a decent ME/CFS service would look like in practice, & produce and publish a model & design for a novel service offering supportive medical care, including details of the tailoring such a service would require for the needs of severe & very severe patients.

Those on the other side of this already have their own such resources, including commissioning guidance for a network of generic MUS/PPS clinics (link) that came out of a process involving the RCs - and, of course, BACME's guides.

A few posters here have discussed over the years what a decent service might look like, but AFAIK there are no published alternative service designs or resources anywhere to be found. The major national charities seem all too happy to collaborate with whatever BACME & the NHS cook up.
 
That's a very good idea.

I think one option is to model it on the services already provided for other life altering chronic conditions that don't have a cure. For example MS, Parkinson's disease, COPD, diabetes.

As far as I know they are all consultant led with specialist nurses as the contact point for patients between consultant visits. It's different because they do have some drug treatments to be perscribed and monitored, but the model seems likely to be similar otherwise. The various therapies only being brought in for individuals who need help with a particular aspect of their illness and care.
 
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