An Open Letter to BACME re ME/CFS Guide to Therapy 2025

[MrMagoo]

I fear it's the standard BPS/BACME model of acting like they agree with an initiative, getting involved and then turning it into a way to get more rehab bullshit funded.

100% this. It happens. It is happening.

 

[Utsikt]

You'd better read the paper. That's what it said.

I have, and I couldn’t see anything about what a normal or abnormal measurement would be.

The results of this analysis provide some support that individuals’ reports of autonomic symptoms on the DSQ were consistent with objective measures of autonomic symptomatology.

This is all they say. Did I miss something?

Autonomic Dysfunction in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Comparing Self-Report and Objective Measures - PMC

pmc.ncbi.nlm.nih.gov

 

[Hutan]

Thanks to the authors, this is wonderful. Special acknowledgement to Michelle Bull - it says a lot about her professional integrity that she does not seek to carve out a core role for physiotherapists in the treatment of ME/CFS. If we had more of that, and less of people with a hammer seeing the world as a nail, we would be so much better off.

There is also some limited evidence that psychobehaviouralism contributes to suicidality; the Tschopp et al. pilot study from 2024 reported that "being told the disease is only psychosomatic was the factor that contributed the most to suicidal thoughts in ME/CFS patients".

Thanks to Nightsong for mentioning this study. I too thought of that Swiss survey to illustrate the point made.
There is a Tschopp 2023 paper, and also a 2024 paper with Tschopp as senior author. I haven't checked the earlier paper, but certainly the second one has the point about BPS ideology contributing to suicidal thoughts.

Forum threads here:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) - a preliminary survey among patients in Switzerland, 2023, Tschopp et al
Identifying the mental health burden in ME/CFS patients in Switzerland - a pilot study, 2024, Konig et al

The finding about the psychological impact of psychosomatic attribution should be up front and centre in the forthcoming British Psychological Society's guidance on providing support for people with ME/CFS.

 

[bobbler]

100% this. It happens. It is happening.

Except the point was also made of not having read the letter properly in the initial lines which seems a bit unusual to say is it (unless it was just a one liner to a friend saying ‘I’ll get to read it at the weekend’ ) and rush to reply so quickly as another few days wouldn’t make a difference to sending this in particular ?


Edit: ok now I’ve realised it was a swift reply cc-ing all receivers this puts a different light on this to ‘getting a party line out fast’ , particularly if one is senior to others who might be receiving it (and then read it and even reply) and hierarchy then becomes a factor.


with what seems like a non sequitur response except for it’s a ‘I haven’t even read the letter’ response

And if it isn’t ever to be read in a non parsing way then it seems ironically representative as an issue patients have been experiencing at micro and macro level. I just don’t know as I don’t know the individual and other communications whether when it’s something they find things they agree with in then they are able to read and reply in what if see a normal way or if it’s habit for everything etc. Or culture /style/ways of doing things in profession that I’m not familiar with

I’m not surprised they want support for what they want to d, everyone tends to, but asking for it whilst saying I’ve not heard what you’ve said doesn’t sound like a promising offer - but made to look like an olive branch to put shoe on other foot as if instead of that being uncooperative of not reading and responding somehow the idea might be the hope to give onlookers that turning it down is somehow uncooperative etc

So feels like a game/tactic (I have fencing or chess or something like that in my mind) and perhaps the same m.o. that’s been used before however many times, but that’s of course only based on what I do have experience in/of watching so I’m curious if things are different in medicine/rehab

But it reminds me of the ‘don’t acknowledge the premise of the question’ type thing but this time by finding one point outside the gist to justify the pre-ordained response.

However this might be accidental due to the rush

And
The alternative is it’s a template and somehow it really hasn’t been read and really is just sent to anyone getting in touch just with the odd tweak to ‘personalize’

and if so, when it is read then I’m not sure how it will go down

 

[JellyBabyKid]

Sick people need real help, not glib f*ckwits parading new ways to patronise them.

I really wish we could say this to more people.

There seems to be a fundamental understanding barrier as they will just look at us with confusion and say "but, we are helping" and wilfully or genuinely not understand that you cannot rehab your way out of something you haven't treated.

Rehab is not a replacement for treating the underlying cause and if rehab isn't working and people are getting sicker (which you can clearly see as you discharge them from clinics for non attendance/non compliance) then you clearly have not found the cause of the problem.

You are trying to reinflate a tire without patching the puncture.

They have had decades to prove this is approach and thanks to their complete lack of follow up data and total faith that this works, they cannot or will not see the problem.

Edit for clarity

 

[hotblack]

There seems to be a fundamental understanding barrier as they will just look at us with confusion and say "but, we are helping" and wilfully or genuinely not understand that you cannot rehab your way out of something you haven't treated.

I think this is a really important point. many do really think they are helping so feel put out when told they’re not. They can’t see the harm that ‘trying to help’ does even if there is no evidence for their help. Perhaps if we use the example on severe people where there seems more acceptance that rehabilitation isn’t appropriate that will help people understand?

That these approaches give false hope is mentioned in the letter, another factor I think is important is the wider appearance of treatments, referral pathways, etc, which makes other healthcare professionals think there is help when there is not. A lot of time and money is wasted on creating these frameworks that other healtchare professionals rely upon and trust. And that is precisely what enables ongoing poor outcomes and neglect. So even the most well intentioned person doing their best to help can, even if unintentionally, perpetuate the problems we see.

 

[Jonathan Edwards]

I have, and I couldn’t see anything about what a normal or abnormal measurement would be.

Oh dear. I wrote this so long ago I can't remember if there was more.

 

[PhysiosforME]

I had not heard of Bridges self-management.
I worry that all the politically correct talk is drowning out any reliable evidence related content.

I have heard of Bridges self management. I could write a long response going off piste about self management but may save it for a rainy day

 

[PhysiosforME]

I have had my head full trying to get the letter off and also writing a brilliant new theory of water on the brain this week. Tomorrow I hope to have time to write back to Dr Sivan. I shall make it clear that the ME/CFS community and I do not see rehabilitation as relevant to the illness.

I think the problem here is definitely the traditional view of rehabilitation! It is based on the deconditioning theory and expects people to improve.

If i have to use the word rehabilitation I tend to quantify it by using a definition of rehab that is pretty old (1980) from the cancer field but does include supportive care - in my opinion it fits much better with the broad range of people physios can support amd much more aligned with ME. But I'm pretty sure this isnt a common perception/understanding of the word!

 

[PhysiosforME]

Thanks to the authors, this is wonderful. Special acknowledgement to Michelle Bull - it says a lot about her professional integrity that she does not seek to carve out a core role for physiotherapists in the treatment of ME/CFS. If we had more of that, and less of people with a hammer seeing the world as a nail, we would be so much better off.


Thanks to Nightsong for mentioning this study. I too thought of that Swiss survey to illustrate the point made.
There is a Tschopp 2023 paper, and also a 2024 paper with Tschopp as senior author. I haven't checked the earlier paper, but certainly the second one has the point about BPS ideology contributing to suicidal thoughts.

Forum threads here:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) - a preliminary survey among patients in Switzerland, 2023, Tschopp et al
Identifying the mental health burden in ME/CFS patients in Switzerland - a pilot study, 2024, Konig et al

The finding about the psychological impact of psychosomatic attribution should be up front and centre in the forthcoming British Psychological Society's guidance on providing support for people with ME/CFS.

Thank you
M

 

[Sean]

Much thanks to the authors for this important and well informed statement. I can only hope some in power are listening.

I suppose this letter is mainly relevant to people in advocacy groups, people in the rehab business and clinicans or other people or groups that provide services and that see patients and that are UK based?

It is relevant to all ME/CFS patients, everywhere.

I fear it's the standard BPS/BACME model of acting like they agree with an initiative, getting involved and then turning it into a way to get more rehab bullshit funded.

This.

I doubt that anyone involved in this in any capacity is under any illusion that this is anything but a new label on the same old bottle of vinegar. What does matter is professionals actually saying so and putting them on defence.

And this.

--------------

Perhaps if we all support this society, we could have a specialist medical home (Physical and Rehabilitation Medicine)​

Go infinitely far away. And stay there.

 

[Eleanor]

So the usual woo?

The authors of the LISTEN trial said this about their work:

The limited understanding of how much change is clinically meaningful in this population along with the unblinded design, the use of self-referral as a recruitment method and variable usual care may have introduced unintended bias and thus limits robust conclusions about this intervention.

Yet it's being used as the "evidence base" for this intervention they're promoting at this conference of the people running LC care.

Imagine if informed professionals at the conference boycotted the session and instead went into another room and had a discussion about ways they could actually help us. (I can dream.)

 

[bobbler]

It feels like this letter needs to go to GPs as the gatekeepers to referrals but also isn’t it gps that play parts in this demand-supply idea that icb/CCG apparently use to decide what gets how much funding in what area. But don’t know the politics of doing that.

Although they also get the tail wags dog issue where if all they can offer is x coz waiting lists are closed for everything else then diagnosis ends up justifying being sent to x (which has photon been iapt type things in the past as there is always supply there)

And of course the neighbourhood whatevers might involve their input and offer them the opportunity of sending their sick to rehabbers even more , or give them no choice in offering it so they can ensure one immediately get stuck with a ‘said no, non compliant’ stuck in their file having been tricked by the GP that ‘you have a choice you can always do no to harmful treatment and have nothing’

Ie not those who created the system for whatever reason, but those who either fund or send people there creating the illusion of ‘demand’.

But it seems not being asked or allowed to have oversight as to whether it does what it even claims, nevermind whether that is harmful nevermind helpful nevermind there is something else needed or better value for money as a gap etc.

although if it was going to all individual bacme members too, then I’d be intrigued if all are in agreement with the leadership and therapy or if there are some there who it might get through to.

I think it needs to be exposed how transparent the opportunism is even if no one seems keen to change the part they play in it even after they realise everyone (including them) knows the idea it helps is a sales line and the whole thing they think is just a farce but don’t seem to get how it’s removed for some ever having access to life or being them and is the most horrific violation you can do , not just ‘ some nice person offering a bit of chill out that mightnt help but still…’ .

All parts of the system that aren’t hurt seem a bit addicted to having this option even when they know it doesn’t work or isn’t the right thing. And they often have friends and colleagues who are making their living out of it but don’t have to see or when they do get primed to see as weird the truly sick that this whole farce has been massively harming and trampling. The sad truth is a lot quite like it because it feels twee ‘niceities’ to ‘deal with’ upset people and offer these things and we have a health system focusing on the least sick.

The general population don’t even want to hear from us even when they are friends so like having somewhere they can tell them to shove off to and tell them about your woes instead and having that to say means they arent the bad people/friend they are actually being they think. So it’s working as a nice crutch for everyone else to not feel guilty or have to acknowledge the ill.

And the truth is a lot of patients who aren’t as badly off cos they are milder (when we think of the dumping bucket of ‘fatigue’ too) and ended up ok financially got it later in life and get sympathy and didn’t have the other symptoms and vile bullying might seem happy to sign off this for themselves at the expense of others who can’t step out of these ‘options’ because they are truly ill . Or at least not have to fight it much because their position means it doesn’t affect who they are and they really can just see it as an offer to say no to.

But would be the ones well enough (and because of this and not looking ill or having sleep and other symptoms as ‘weird’ are also given access to society and preferred by others) to have a voice in the way official things are set up to be arduous to get involved with commissioning etc and the ones in front of GP saying the right things more etc. People know how to play the game (pretend to enjoy CBT in order to get your part time hours other adjustments or early retirement) but you can only do that when you are well enough and have power


So there’s an issue I haven’t come up with a term for.


But at least the letter might contradict the sales pitches some of those gatekeepers are being taught to say and strike home with some of the more moral of them. We need to slowly build if not allies just those who will open their eyes to these truly sick people existing and getting disappeared in the opportunism of others and being made collateral damage because their funding is getting siphoned off .. again, to do goodness knows what to them. And that none of it is ‘nice’ as the rest justify themselves it has been sanitised to.

 

[MinIreland]

Would just like to express my gratitude to @Jonathan Edwards and the other authors for writing this excellent piece. Thank you so much.

 

[Jonathan Edwards]

I have replied to Manoj Sivan:
He had copied in all the other people who gt a cc so I did as well.

Dear Manoj,
As someone trained in rheumatology and rehabilitation, I am quite certain rehabilitation is not the right approach for ME/CFS. Moreover, the patients are sure they do not want rehabilitation, having suffered so much from misguided therapies in the past. The point of our letter was that there still seems to be no insight from BACME into the fact that 'Rehabilitation’ has nothing to offer here - the 'Guide’ even has no identifiable therapy content.

ME/CFS is usually long-term, often life-long. It requires careful and repeated assessment for differential diagnosis, plus long-term support, including complex home care and nutritional support for the very sick. The clinical picture and recent genetics point to neural pathways so I suspect that neurology will be the long-term home. Unfortunately, neurologists at Queen Square are only now beginning to show some interest. The situation for children and young people is different - I see no reason not to continue with care under paediatrics and specialist adolescent units.

In my view the conflation with post-infective illness simply adds confusion. The link to infection for ME/CFS is variable at best and makes little impact on understanding of the illness or management. Self-limiting post-infective illness, as for EBV and Covid, has been recognised for decades and I see no evidence for anything being beneficial beyond the passage of time. Symptoms may be similar and a small proportion of people prove to have long-term relapsing or progressive illness. Separating the two is part of the differential diagnostic process mentioned above.

The priority now is for NHS strategy to focus hard on the very severely disabled and especially those still dying from inanition, which is a scandal. The second priority is to fund some effective biological research to get some idea what might be useful treatment. The current situation is a mess, but I am sure a short-term ‘goal setting’ rehabilitation model is not the answer.

How will HERITAGE develop an evidence-based framework if we have no reliable data on efficacy?

Best wishes,

Jo Edwards
Professor Emeritus in Connective Tissue Medicine
Division of Medicine
University College London

 

[Barry]

I have had my head full trying to get the letter off and also writing a brilliant new theory of water on the brain this week. Tomorrow I hope to have time to write back to Dr Sivan. I shall make it clear that the ME/CFS community and I do not see rehabilitation as relevant to the illness.

Yes, suggesting rehabilitation gives the false impression (deliberately?) an ME patient's condition can be improved or fixed by it.

I remember a tutor responding to a student's question a long time back, being asked what he thought the most important aspect was in trying to solve a problem. The tutor replied that invariably it's striving and ensuring to understand the problem properly in the first place. These folk never seem to get their heads around that.

Brilliant letter.

 

[hotblack]

Excellent again, thanks @Jonathan Edwards
I know (some of us) give you some grief on certain points at times but we’re incredibly lucky to have someone willing and able to give their time and expertise as you are.

 

[Chandelier]

we’re incredibly lucky to have someone willing and able to give their time and expertise as you are.

 

[Utsikt]

I think the problem here is definitely the traditional view of rehabilitation! It is based on the deconditioning theory and expects people to improve.

If i have to use the word rehabilitation I tend to quantify it by using a definition of rehab that is pretty old (1980) from the cancer field but does include supportive care - in my opinion it fits much better with the broad range of people physios can support amd much more aligned with ME. But I'm pretty sure this isnt a common perception/understanding of the word!

WHO:

Rehabilitation is defined as “a set of interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment”.

I think this definition is far too broad. The word re-habilitation clearly implies that something (health) is to be regained.

Instead of expanding the concept of rehab and essentially defining it as «everything a physio does», why not make it clear that physios can offer more than rehab?

 

[NelliePledge]

Excellent again, thanks @Jonathan Edwards
I know (some of us) give you some grief on certain points at times but we’re incredibly lucky to have someone willing and able to give their time and expertise as you are.

Seconded or twelfthed

Apologies for social mediaishness but my reaction to @Jonathan Edwards response letter is BOOM

(It’s like your team going ahead again a couple of minutes after conceding an equaliser)