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

Jonathan Edwards said:
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
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A new theory with regards to ME/CFS? My head has felt heavier since getting ME and it has the feeling of a sponge that is holding on to more fluid than usual but it may be something else makes it to feel that way.
 
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Jonathan Edwards said:
Dr Sivan has responded again.

Dear Jonathan
Thanks, great points, agree with most of them. I am conscious of colleagues' inboxes, so I will keep this brief and will not send further emails. I have added comments in blue (bold) text below yours:

Dear Manoj,
...

A person has hip replacement to reduce pain and improve function - that is rehabilitation. A person with cancer has tumour debulking and chemo for improving symptoms and function - that is rehabilitation too.
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I know I'm no expert here, but this seems to be wilfully conflating two different forms of treatment by oh-so-conveniently giving them the same name - "rehabilitation" for ME/CFS versus rehabilitation for other much better understood illnesses. In the medical examples cited by Sivan they are sufficiently well understood for clinicians to know what is needed to safely help a patient to recover their function as best possible. But that is not the case for ME/CFS, where it is often undertaken borne of medical ignorance and negligence, when the medical condition the patient is supposed to be recovering from is far too poorly understood to risk such a course of "treatment" at all, and is actually harmful in a lot of cases.
 
AliceLily said:
A new theory with regards to ME/CFS? My head has felt heavier since getting ME and it has the feeling of a sponge that is holding on to more fluid than usual but it may be something else makes it to feel that way.
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I think it’s a more general theory.
We have a thread for it here:
forestglip

Thread 'A Disequilibrium Oncotic Model of Brain Fluid Flux, 2026, Edwards'

A Disequilibrium Oncotic Model of Brain Fluid Flux

Edwards, Jonathan

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Abstract
Application of the revised Starling model proposed by Levick and Michel (2010) suggests that cerebrospinal fluid (CSF) production is essential for maintenance of a low interstitial protein content in brain irrespective of any role in waste clearance.

The anatomy of the brain, ventricles and choroid suggests that CSF enters brain by net bulk diffusion through both internal ependymal and external pial surfaces as part of a continual refreshment of low protein intertitium in...
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Jonathan Edwards said:
The Oxford English Dictionary defines rehabilitation as:
The action of restoring someone to health or normal life through training and therapy after imprisonment, addiction, or illness.
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So from the perspective of Sivan's Long Covid Clinic he would presumably claim the rehabilitation is restoring people to health after Sars-Cov-2 infection. Which is nonsense since they have no evidence they are restoring anything.
 
Barry said:
this seems to be wilfully conflating two different forms of treatment by oh-so-conveniently giving them the same name - "rehabilitation" for ME/CFS versus rehabilitation for other much better understood illnesses. In the medical examples cited by Sivan they are sufficiently well understood for clinicians to know what is needed to safely help a patient to recover their function as best possible. But that is not the case for ME/CFS
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Yup. The absolute minimum is knowing what you're trying to rehabilitate and the safest way of doing it. Guessing's not acceptable.
 
Chandelier said:
I think it’s a more general theory.
We have a thread for it here:
forestglip

Thread 'A Disequilibrium Oncotic Model of Brain Fluid Flux, 2026, Edwards'

A Disequilibrium Oncotic Model of Brain Fluid Flux

Edwards, Jonathan

[Line break added]

Abstract
Application of the revised Starling model proposed by Levick and Michel (2010) suggests that cerebrospinal fluid (CSF) production is essential for maintenance of a low interstitial protein content in brain irrespective of any role in waste clearance.

The anatomy of the brain, ventricles and choroid suggests that CSF enters brain by net bulk diffusion through both internal ependymal and external pial surfaces as part of a continual refreshment of low protein intertitium in...
  • Like
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Thank you Chandelier.
 
MrMagoo said:
What’s he rehabilitating? I can do everything I used to, except I can’t do it for long or repeatedly.
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Or well. That's another thing that is never part of the discussion.

I could technically do a work day. Maybe even a work week. Just don't expect me to deliver anything. I can be there. I can make it look like work, but both the performance output and quality would be atrocious. And it would fall over time, to the point where I would no longer be able to be present, but even the very first things I could do would fall well short of my normal performance, let alone my best performance, all of which is far below what any employer would pay a salary for.

This is usually what they lump under 'perfectionism'. We expect to perform at a normal rate, with enough left to live at least a quiet life. They think our expectations are that we expect to perform super-humanly, or something.
MrMagoo said:
If I want to go swimming, running or weightlifting I could. I shouldn’t, but I could if I wanted, which I certainly do not.
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Another thing they are clueless about. It's a common 'gotcha', or at least they think it is. "What if there were a fire? Would just lay there?" Depends. There have been times in my life where, no, I would not have been able to. Other times I would have, but if I'd needed to run, then no. Most of the time, I could do those things, and you know why? Because I'm not actually deconditioned. In fact, aside from being underweight, physically I look fit and lean.

But performance would quickly degrade, eventually fall to a standstill, then I would end up in a state where, no, even if there were a fire in the freaking room I wouldn't be able to move away from it.

All of this has been explained by millions of people, but somehow it's all OK to just say "well, you're wrong" and not think about it any further. The same people who would scold most people scoffing at depression saying you could just tell sufferers to pull themselves together and stop whining, they'd lump us along with that, and still find it OK to scold us for similar reasons, because it's not quite depression, just something like it, or whatever.

Never have to justify anything. No system can succeed in those conditions.
 
rvallee said:
Or well. That's another thing that is never part of the discussion.

I could technically do a work day. Maybe even a work week. Just don't expect me to deliver anything. I can be there. I can make it look like work, but both the performance output and quality would be atrocious. And it would fall over time, to the point where I would no longer be able to be present, but even the very first things I could do would fall well short of my normal performance, let alone my best performance, all of which is far below what any employer would pay a salary for.

This is usually what they lump under 'perfectionism'. We expect to perform at a normal rate, with enough left to live at least a quiet life. They think our expectations are that we expect to perform super-humanly, or something. Because they don't have a freaking clue.
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But this is the thing, if I had a stroke and needed to learn to walk again, you are basically practicing walking, strengthening the muscles to bear weight, until you can walk.

I can walk, so what are you rehabilitating for me? My only limitation is fatiguability caused by an illness of unknown origin which cannot currently be treated or cured.

You can’t rehabilitate fatiguability caused by ME/CFS. That’s the only issue people with only ME/CFS have.

They might as well start trying to get people in a coma to type out the works of Shakespeare.
 
Jonathan Edwards said:
The action of restoring someone to health or normal life through training and therapy after imprisonment, addiction, or illness.
It also generally refers to the process of restoring a person, object, or area to a former good condition or functional state.
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From the FINE trial:
“There is no disease–you have a right to full health. This is a good news diagnosis. Carefully built up exercise can reverse the condition. Go for 100% recovery.”
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What is the illness? No one knows yet. That means it can be ignored, there is no illness, just the belief in an illness, or a fear of, or, uh, something. It shouldn't, but it just is. Or I guess in the context of Long Covid, the acute illness is over. That was mostly Wessely's preferred framing. Sure, the illness did happen, probably, but it's over now, because illness of this type is only acute, never chronic, or he'd know, or whatever.
 
Kitty said:
Yup. The absolute minimum is knowing what you're trying to rehabilitate and the safest way of doing it. Guessing's not acceptable.
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This is how the whole thing got out of hand, how 'functional' disorders got defined by not having to care what the problem is, which allows the solution to also not care either way. It allowed anyone to say anything and get away with it. The problem is some personal conflux of a multitude of dimensions, and it can all be managed with thoughts and activities.

I guess this is where they mark the split between 'biomedicicine', aka real medicine, and biopsychosocial/psychosomatic models: the cause doesn't matter, so neither does the solution. It's whatever. Could be just a smile, or a phone call.

It's the point at which medicine split off from being scientific and veered into being part science and part woo, a problem that will only grow until all of this is debunked and thrown aside, but that will require a whole lot of science and the motivation to do what really helps people, rather than what a few want to offer.
 
It’s an interesting way of looking at it, so I am deconditioned, because I’m severe, but I cannot recondition, because I’m severe. Then there are people, who are less severe and are not deconditioned, so don’t need to recondition. Maybe they think there’s some magical person that is half severe and half not severe so these cancel each other out and rehabilitation becomes appropriate?

As for what I’d do in a fire, probably try to crawl out the window and hope I didn’t fall off the roof while curled up in the resultant mess. I’d be screwed. As I would in most circumstances and often am. Which is why I need real practical help not someone telling me I need rehabilitation!
 
rvallee said:
This is how the whole thing got out of hand, how 'functional' disorders got defined by not having to care what the problem is, which allows the solution to also not care either way. It allowed anyone to say anything and get away with it. The problem is some personal conflux of a multitude of dimensions, and it can all be managed with thoughts and activities.

I guess this is where they mark the split between 'biomedicicine', aka real medicine, and biopsychosocial/psychosomatic models: the cause doesn't matter, so neither does the solution. It's whatever. Could be just a smile, or a phone call.

It's the point at which medicine split off from being scientific and veered into being part science and part woo, a problem that will only grow until all of this is debunked and thrown aside, but that will require a whole lot of science and the motivation to do what really helps people, rather than what a few want to offer.
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Yes it feels like maybe one underlying cause is some loophole in how (legal) responsibility can be bartered with. or is thought to be possible (thinking of situations where people say 'you are protected by law' but actually good luck in getting through that to actually achieve it even if you aren't an ill person and those opposite you will know that) Ie the law or the systems that mean someone or all of them will ever face consequences be it fear of losing job for bad research or a court case for causing harm etc,

Enough who are in positions they should be the oversight but are choosing to allow this move and not differentiate this ‘literature’ (where it’s propaganda really isn’t it because the research doesn’t reach the methodology of science or research just feign la enough to con some it is when it’s pushing opinion and ideology) instead of doing the job of gatekeeping. And you don’t do that unless you think you csn talk your way out of being held responsible for the consequences etc.

I remember watching many inquiries in recent years and that tactic of don’t go emailing the senior person to make them aware of the problem glared bright - the term being claiming ignorance (even tho you are in charge) somehow should be a way of reducing blame on you. Everyone suddenly became very dumb and circumspect contrary I expect by tone of normal emails to their actual personality would indicate.
 
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Jonathan Edwards said:
Dr Sivan has responded again. I am not sure what, if anything to say at this point.
It is defined by WHO as "set of interventions to optimise functioning or improve functioning", and that is 90% of any healthcare activity. A person has hip replacement to reduce pain and improve function - that is rehabilitation. A person with cancer has tumour debulking and chemo for improving symptoms and function - that is rehabilitation too.
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Jonathan Edwards said:
I sent a brief second reply to Dr Sivan just suggesting he read this thread.
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If he does (particularly if he joins in), I'd be curious to know what is in the 10% of healthcare activity that lies outside his definition of rehabilitation.
 
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