Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

But will it change anyone's view or the practicalities of care provision? I think not. And as you say, the pattern is that such approaches are overtaken by genuinely evidence-based care. If there are responses they will be seen to show just how deluded the patients and their advocates are.

There are bigger fish to fry.

 

The Norwegian Cancer Association recently funded Reme’s study on hypnosis pre-operation for cancer patients. So they are pretty much everywhere.

 

I wonder if the witers of this piece, names not important and staff and readers of BMJ know how to use YouTube.
They might want to see "Doctors with ME", by Anil van der Zee.
An ass. psychiatrist and a psychiatrist pointing out that CBT is not to be used for psysical illness.
And at the end of the documentary one of our members here @Mark Vink explicitly warns for GET, that made him very severe.
When doctors don't believe their patients, could they at least try to really learn from their collegues?

 

When doctors become patients, it appears to me like they often lose their credibility as doctors when it comes to their own health. There are countless examples of doctors that got LC that were gaslit by their peers. And a few of them have said outright that they don’t if they would have changed their mind without experiencing it themselves.

 

Not that it matters much, but we already know that it's reversible, and it can switch on and off rapidly in some cases, which I don't think any conception of neuroplasticity would make sense of. At least the symptoms can. We don't know if the underlying cause shifts along with the symptoms perfectly, but common reports of remission and recovery include a gradual improvement, then a sudden rapid end of all symptoms, as well as recurrent episodes of increased or lowered symptoms, as well as episodic triggers, such as an infectious illness like a cold. This is a process that can set in or off in hours, maybe even less.

But, really, it doesn't matter much. Facts are simply irrelevant here, for now. They can and will argue this anyway, right up until most of their peers stop listening to them and the institutions lose interest in their scam. Just like they did with peptic ulcers, it took far longer than it should have, but an entire industry was simply shut off and no one ever looked back. In fact it's as if the whole thing never happened, psychosomatic literature never mentions it anymore.

 

That would involve them recognizing their own role in this. Which is at least as significant, probably even more, and so very unlikely to happen. It's one thing to push a scam, it's a whole other thing for otherwise serious institutions to keep buying every bit of a certain scam sent to them, without ever caring that it's clearly a scam.

From my perspective, the quacks deserve a lot of blame, but the lion's share is higher up, even though in some cases they are one and the same (Wessely & Gerada, Flottorp, Rosmalen, etc.). The funding and oversight bodies, the journals, the professional associations, they all ate this up without ever being bothered that it's obviously all junk, because they are drunk on the failed quest for medicine's delusional philosopher's stone. They are supposed to be far more responsible over these things, and without their continued, and ongoing, assent, none of this would have happened.

 

I still see it regularly. It's revolting, especially considering how significant the role of medicine has been in maximizing the number of cases and their negative impacts. It reminds me of an army that doesn't bother being careful about friendly fire. You're in the way of my rifle? Sucks to be you. It's disgusting, and says a lot about why things are so bad. Although, really, this isn't so much about the medical profession as how humanity is when the social mask is off, when it's permissible, even encouraged, to be indifferent to the lives of others.

 

Had a look at that report about the Leeds unit (reference 12), but it was about only 11 patients.

 

when I was looking for the CQC reports I struggled to find the NICPM so put in Leeds as the location and then 'hospital' and then 'mental health'. For the former 5 pages of results came up, including a lot of NHS as well as private hospitals and clinics - although of course I wasn't looking to see if any were labelled long covid etc.

 

And many of those who get better end up going back to the “irresistible” old ways. À la Garner “model patient”.

 

Given that we have been discussing diagnostic codes recently - on the linked NICPM unit report they state that they categorise ME/CFS under the ICD-10 F48.0 code (the old neurasthenia code) rather than G93.3:

I wonder how prevalent this is in the NHS - not sure if any research teams are currently looking at the epidemiology but it may be possible to see in eg. the NHS HES databases if the hospitals that have low numbers of G93.3 diagnoses are still using F48.0?

 

Indeed

I felt sick when i read that the BMJ has basically taught every Dr that I go to, from gynaecology to dermatology, not to mention my GP & the practice nurses....

That I do NOT need a quiet room to lie down in, because that is harmful to my health - so they need to refuse all the accomodations I need. This piece is going to lead to the services that I need becoming even more inaccessible than they were before.

That when I tell them I cant sit or stand upright for at least 30mins first thing in the morning & therefore cannot take a daily bisphosphonate, I am simply in need of some rehab.

That when I say I cant do all the things that I cant do, that I could if I just had some psychoeducation & some rehab.

ALL the things I need are going to become even harder to get, not to mention the benefits i need to survive.

Sorry but this just cant be batted away by laughing at them & knowing how cult-like & anachronistic their views are. This piece is going to put children/families at higher risk of social service/child protection proceedings, its going to lead to even more problems with benefits, with GPs wanting to reduce meds, with higher risk of people being sectioned for refusing to complywith referrals/instructions to these rehab places.

Its going to make it more difficult to get social care, and we can all just completely forget the chance of a side room during a hospital stay, because now that has been categorically stated, in the BMJ as harmful.

The fact it's in BMJ gives a stamp of approval & cements the prejudice & ignorance of the medical establishment, and they have an awful lot of control over my life.

Anyone who thinks this wont have very real very serious consequences for patients, has never been a patient who needs accomodations to access services, they/ve never sat through the agony & suffering of a noisy Drs waiting room or tried to explain to the nurse that when you say you cant think or speak when the light is on & are therefore incapable of explaining that the dose of drugs theyre giving you is inaccurate because they misunderstood something on your list of meds you're taking.

Or been reliant on benefits for survival or dealt with an education board that wants to refer to child protection because the Dr friend they asked tells them that the mother keeping the child out of school & in a dimly lit room is harming them.

Not to mention the poor individual patients in hospital cyrrently being tortured and made sicker by ignorant drs removing their eye masks opening widomws & banging about. God help them.

Sorry but this is an emergency for those of us who are worse than mild.

I dont know whether its better to fight it or just ignore it, because since it cements people's current ideas, any arguing wont do any good anyway, but lets not pretend that it isnt going to seriously our lives, because it is.

My upcoming appt with endocrinolocy, which I hoped to correct an idiotic letter from a previous dr, has now become a serious minefield which could blow up in my face.

I'm scared.

 

Putrino has commented on SoMe:

https://threadreaderapp.com/thread/...gw_aem_0tXJ27WUy1LqrEpRrcRImg#google_vignette

 

Rapid response by Suzy J. Evans:

 

Yes, we do know that. But it would fit very well with neuroplasticity if that involved a feedback loop continually primed by a T cell cytokine peripherally. Remove the T cell signal and the adverse synaptic loops can unwind and return to homeostasis. If the loops are a bit entrenched then maybe inhibit one of the arms so that unwinding occurs.

I am severely deaf. I have excellent new technology hearing aids. But sometimes they need repairing or I wear an older set when doing sport. I am aware of re-setting of my perceptual system over minutes, over days and over weeks. If I take a step back (at night or using older tech) and then forward the input is weird for short periods. Over longer periods more complex recognition processes evolve and regress, so that I have to re-learn bird calls with the shift in frequency spectrum. I have no tinnitus as long as I use my aids daily (none even at night) but if I miss more than a few days tinnitus returns at night. My impression is that our sensory inputs are constantly undergoing neuroplastic change like the input to a recording mixer controlled by a technician with 200 control levers.

 

I suppose it's a form of learning, isn't it? I'm currently learning to read with new varifocals, and have reached the delightful stage where both the new ones and the old ones make my eyes sore.

Do you think this aspect of neuroplasticity might have a connection to sensory sensitivity, or is that too much of a stretch?

 

Oh yes, I think so.
But I think 'central sensitisation' is going to be a simplistic (i.e. unhelpful) analysis. The sensitivity is driven by some immune cells that maybe also get a leg up from some antibodies from some other immune cells. That level of complexity is the norm for chronic disease of this sort.