Royal London Hospital for Integrated Medicine: Physiotherapy for Chronic Fatigue (CFS), Aug 5 2021

Doesn't this mean the onus will be on GPs to make the ME/CFS diagnosis? Wasn't it quoted in the past that about 40% of those who were referred to specialist CFS (CFS/ME) clinics were misdiagnosed? That figure obviously may have changed over the years and vary from clinic to clinic, but for a diagnosis of exclusion it seems there will be nowhere to refer patients for a more 'specialist' clinical opinion.

Of course, that is probably already the case in many parts of the country as not all CFS/ME clinics have a specialist doctor or consultant on the team anyway.

 

But, as in the garage analogy, there is likely to come a point where people realise they are being conned.
I think there is as much cock-up here as conspiracy.

 

This is almost a koan. Is it better to have a clinic run by someone informed but wrong, or by someone who hasn't a clue.
To those of us who have experienced all the dogma and empathy of the Spanish Inquisition at these CFS clinics it will feel sweet victory, no matter how pyhrric to have them gone
No doubt the vacuum that follows will be filled with whatever is cheapest

 

Is it though?

For example, IAPT seems to be about providing therapists who have the least qualifications as possible.

In my own case a medication I am on means I have to have regular reviews with a nurse. It's pretty straightforward as long as I'm not having any problems or ask any questions. Last time I saw the nurse I asked about switching to another medication. The information she gave me was completely incorrect and she assured me she knew because she's in the same medication herself. I politely explained why she was wrong and luckily had brought the Patient Information leaflet with me so I could demonstrate I wasn't just being awkward. I got a shrug and a "dunno". This is supposedly a specialist nurse.

 

I think I recall that one of the Thought Cages programs on Radio 4 looked at ways to improve patients satisfaction. It identified some simple/cheap ways of improving patient satisfaction and posed the question what's wrong with doing these things to boost your performance figures?

There seems to be no good quality evidence supporting the use of CBT and/or exercise in ME/CFS. However, they are relatively cheap and, if the patients like them then, what's not like!

I think I recall that @Jonathan Edwards discussing that Doctors aren't compelled to treat people i.e. where no proven/effective treatment available. So maybe we need to push for studies like GWAS - actimetry has been suggested + other promising research, to be pursued. Centres of excellence/referral services might be a vehicle to help support research - I'm not talking about CBT & exercise by the way.

 

explains a lot
"Formerly known as the Royal London Homeopathic Hospital"

 

In the face of the pandemic/post pandemic pressures, a decade of systemic underfunding and the catastrophic understaffing occurring post Brexit, it's very difficult for anyone openly organise, let alone effectively conspire, to achieve a desired outcome for a particular service within the NHS. Looking at the patterns of what now happens to CFS services in the UK maybe just so much pareidolia - shapes in the swirls of chaos.

Understandably staff will want to hang on to certainty where they can find it, we probably need to be careful not to apportion blame to those who are just trying to hold together a collapsing system as best they are able.

 

I'm quoting this out if context here as I know this was meant as the "establishment" point of view & not your opinion @FMMM1.

I agree with you - from their point of view what's not to like.

The problem is that patients may say they like them at the time. We know that very few clinics do long term follow ups so we don't know how patients feel a year or more later.

Also because a lot of these patients are new, and in the past have been discouraged from joining ME support groups this means they are more reliant on the clinics and therefore more likely to feel a bit dependent on them & keeping on their good side.

As govt or health authorities can state there is treatment available then it gives the appearance of doing something. Even when that something is ineffective or harmful.

At least if there is no treatment beyond the support needed to give symptomatic relief that doesn't claim to address the underlying illness, assistance to access benefits and social support then patients aren't being harmed by inappropriate treatment and nobody can pretend that this patient group is being effectively treated.

The current scenario assumes there is treatment that addresses the underlying condition and assumes that this treatment is generally effective. This feeds the bias and stigma patients are subjected to - there's a treatment that helps other people so why isn't it helping you? The assumption being you must be an unhappy and workshy individual.

On top of that many patients subconsciously take on responsibility for being ill. If only I could get the hang of pacing I'd be better etc. This is an extra and rather cruel burden on patients. Especially when they are already isolated by other people's attitudes towards them.

So, in a way, even if the clinics don't harm every single patient that goes through their doors, they harm most patients who have that diagnosis because of the way they feed into the stigma and bias patients experience from others and how harshly they can judge themselves.

 

There are people posting on Facebook—under an ME Association post about this video—saying they have seen this physio and were very happy with her approach, which reveals that there really is no need for the old silly narratives of deconditioning, etc.

 

Yes. When I read their brochure of treatments on offer, it seems they use the word 'integrated' for 'alternative'....

Edit: Or being more generous, at the very least it's just 'therapist led' medicine.

 

I agree and as you had identified I'm accusing the Government of gaming the system - they are providing treatments which are ineffective but "evaluating" these treatments in a way which makes them look effective - window dressing.

 

I do wonder how many people are given a diagnosis of ME/CFS who are really in the phase of a post viral fatigue syndrome, i.e. a condition that is self-limiting even it continues for 1-2 years. Many of these patients may be at the phase where they are able to increase their activity levels naturally. Given that (I think) all these 'fatigue' clinics only offer a very time limited treatment course (usually less than 6 months in total), this only compounds the issue of how 'helpful' they are to PWME. There will always be people who appear to benefit from them because they are designed for newly diagnosed patients, with only mild or 'moderate' symptoms (i.e. well enough to travel and follow the therapy) and, without an ME/CFS biomarker, at least some of these people will actually have a self-limiting form of PVFS.

 

feeling debilitating fatigue is awful no matter the cause and if something helps that is great. but why should that mean that ME needs treated the same way?

Ramsay said that ME is a disease where exercise makes you worse so if exercise makes you better then it can't be ME. Not that you are not sick and not that you should not be treated to feel better.

SW had to make ME disappear because he needed a disease category that could be cured by exercise, simple as that, we were thrown to the dogs.

 

I learnt when my kids were very small, that when everything went quiet it usually meant they were up to something.