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

Why this obsession about ‘hope’, which on the basis of our current knowledge is unjustified hope or even false hope?

I remember when medicine had the same obsession about not informing people they had terminal illnesses because it would take away their hope. I remember the mess around my father’s cancer diagnosis some forty plus years ago, when no one in the family knew what the other knew and nobody talked about what was likely to happen. The hospice movement had to struggle for years against this irrational obsession about false hope. I remember when I started work around the same time how patients with MND (ALS) only started to get appropriate and proactive management once the reality of their condition was acknowledged, but there were then still neurologists who believed that their patient should not be told their diagnosis, which meant they had much messier and inefficient care and a much poorer quality of life. The consultants may not have been able to deal with the emotional challenge of admitting there were no curative treatments but this stood in the way of timely and effective management of the condition.

Are there many or indeed any people with ME/CFS who rationally believe that there are currently no curative treatments for their underlying condition who consequently give up on doing anything? My experience is that even the very severe are constantly pushing (gently please) at the upper limits of their activity. Having a fluctuating condition, my lack of hope in an immanent magic cure has not stopped me doing what I can, which in periods of remission included traveling to Tibet, to Antarctica and Japan, and equally included trying to at least step out of my front door most days when the rest of my time was spent horizontal in a darkened room living on cold food straight from the can.

Six weeks in South America or eating in a world class restaurant with views of Mount Fuji, did not inoculate me against subsequent relapse, when these ‘hope’ merchants’ beliefs ought to mean that my ‘false beliefs’ or ‘conditioned illness behaviour’ should have been shattered by such activity.

When will these pedlars of hopium actually address their own false beliefs that inhibit appropriate clinical care which for the very severe is literally killing them? As we have said before this obsession with hope is the equivalent of advising people with debt issues to try to resolve their financial difficulties in a casino or a betting shop.

 

or take the starting measure straight after someone has done a very long journey when they are already ill - some on this thread have noted they were offered a many hour ambulance ride there (but sensibly declined as they knew what it would do to their health). That's before whether there is all the check-in stuff they might have had to do being arduous, takes a while to get the bed/room right etc.

When I was severe but not as ill as I was now then I knew I might never get to see the sea again unless I got more well (I know someone else said this recently somewhere on this forum too, and yes I had that moment too). SO actually worked out as a guess that if I did try and make the trip eg as a 'holiday/trip to see the sea' how many months I might need to stay somewhere to be able to recover from the journey and actually be able to then even see the sea from said house, assuming for example it was right on the coast. We are talking similar times to the full stays described in this report - if I'm lucky and I hadn't permanently deteriorated from it then anything from 3-12months. And as I always underestimate by at least double then at least 6months, however much it might have perhaps offered a take the load off vs the normal other committments.

Of course by 3-6months in particularly if you are getting heavily bombarded with being made to reword everything and everyone gaslighting you and making you feel unsafe if you mention you are still recovering from the journey there then ....hmm with risk of not getting your discharge, is anyone going to be in a position to say they might be better than they were after the journey there, but are still more severe than they were before the trip to the place was even offered? Which surely should have been the real comparator, done by the person who suggested the referral or even you know someone independent - with quite different measures vs their subjective ones?


It is scary to think whether we have been given the full picture here, because basically this is only using those they selected for discharge who then filled in these things and who knows if any were lost or filtered out.

BUt if someone got worse or even died then would it have counted by their supposed reporting given it is only those discharged who even get the access to be part of their counting?

Would a real CQC report have used figures like that? and looked at the 'improvement' in a different way, where it wasn't selectively only including those who had be selected for discharge (aka doesn't that mean in their mind 'successful' and now if they stay selected then finally not at risk of eg sectioning or DOLS etc?)

 

This is absolutely a critical question to be asked of them.

This forum would not exist if member patients, carers, doctors & researchers were bereft of hope.
Patients would not be perpetually trying the "next" & often expensive medication, supplement or alternative therapy claimed to help recovery if they did not have hope.
Patients would not jeopardise their already fragile health by responding to surveys or participating in trials if they did not have hope.
We know some severe patients do lose hope and choose to end their suffering by suicide.

A second question to those doubting our collective hope is what do you say with regards to those who lost all hope & became severe after going through their recommended rehabilitation type programmes?

 

"The CGI-I score is established by consensus within the multidisciplinary team, at the point of discharge..."

Wait what? The MDT completed this, not even the patient

That reads very much to me like a serious case of marking ones own homework? Or am I over reading that !

 

Yes it ticks all the boxes for a cult

 

Also from Brian Hughes

The article contains nothing new, just rehashes points made in other recent pieces

The @bmj.com know this stuff is controversial. But that's what they want

By requiring replies to be routed through their 'Rapid Responses' platform, they drive traffic to their website

It is just clickbait

 

It's possible to make a rapid response to this madness: https://www.bmj.com/content/389/bmj.r977/rapid-responses

Anybody fancy sticking the boot in? Hard?

 

Such ratings are only relevant for internal monitoring or at the extreme of their potential relevance as examples of good practice when the treatment model implemented has been previously experimentally evaluated. Even then they should be used in conjunction with patient feedback.

However it is really scraping the barrel to use such a report to justify a specific treatment approach or to extrapolate a theoretical model of the condition in a purportedly scientific article. To say in all seriousness in effect that ‘a unit in Leeds does this and they think it works’ indicates that advocates of this approach are desperately seeking evidence to justify their prejudged conclusions.

One could say the same of pretty much any alternative medicine approach/clinic. Because homeopaths might feel their client has improved on discharge tells us little about whether their clients had in reality improved or if the inferred improvement was in any way a consequence of the homeopathic medicine used.

 

I thought about pointing out that we have some real hope from the genetic studies but on balance I think it is best to let this piece get forgotten as soon as possible. By the end of the year I think it will be clear just how ill-informed and amateur it is. It is no more than a letter to the Times explaining why it is a good thing for golf clubs to continue to only to admit men as members.

 

It's just the unbelievable continued reliance on bad methodology that I think needs pointing out, genetics studies or not.

[Edit: But I understand there may be more important things to do!]

 

Naw, that's exactly what they're hoping for. Don't give the buggers the satisfaction.

In any case, you might as well argue with people in tinfoil hats.

 

You know when they see “synapses” associated with the genetic studies, they are going to jump in boots & all, and tell everyone they were right all along about neuroplasticity and brain training.

 

Yes, there was some mention of this in papers I was looking at recently around a related area discussed on these forums. And it’s difficult because neuroplasticity is a thing, but gets distorted or used inappropriately into another thing by some people.

Probably a wise way of looking at it. I’m often torn on how much people outside our world need to know about the history (and in some case present) of it all. I don’t see value in going over old ground and ultimately agree the good science will out the bad.

But do wonder if it’s worth more people, particularly decision makers, at least knowing about some of the nonsense so as to include that history in their thought processes and not fall for it. I think many of us have at one point been suckered by apparent experts much to our detriment.

 

Sadly, I’m not sure that any biomedical evidence will deter them from promoting their therapies. As we have repeatedly pointed out, the valid arguments about the inefficacy of CBT/GET are independent of aetiology, and that cuts both ways: when we understand the mechanisms of ME/CFS, I wager that they will continue to argue that CBT/GET/rehab work. They may have to revise – or perhaps deny – the models upon which the interventions are based but they will still claim that they work.

Hopefully, when unequivocal evidence of the mechanisms emerges, these people will be marginalised but I have little confidence that they will be silenced by the BMJ and other organs of the medical establishment that have promoted them for so long.

A key factor may be whether understanding of the causes and mechanisms leads to measurable physiological effects of whatever is found to be going wrong, as it would be hard to argue that a therapy is working if objective biomarkers are not responding. But don’t forget that Chalder and co published a paper which claimed that people with MS reported lower levels of fatigue following CBT than healthy controls!

Given the history, it wouldn’t surprise me if they tried to use any evidence of physiological abnormalities in ME/CFS to argue that CBT/GET should be considered as a treatment option for more illnesses – as in their view it would provide evidence that CBT/GET can benefit patients even when there is a known physical cause and mechanism. It would be nice to believe that by that stage the medical establishment would take them no more seriously than they take homeopaths or faith-healers but I don’t say that with any confidence.

 

I think we should have a full debate about this once DecodeME has reported. Things should be much clearer then and we need to discuss synapses in depth.

The neuroplasticity people may have been right and if they were it is surely good news if that means that the problem is reversible. But they were clearly wrong about methods of brain training and, more importantly, their entire conceptual framework in terms of 'mind over matter'. If the biology becomes understood these people are going to be lost to view anyway. They are only here because there was a void to fill.

Nobody treats myasthenia gravis or autoimmune encephalitis with psychotherapy and star jumps these days.

 

It really is time for government/Department of Health to go after all the funding of the parties who are publishing all this misinformation. I am sure the BMJ likely receives public money, that should cease given they commissioned this work. All the "researchers" who publish this garbage should equally be removed from post. Things will get a lot less problematic if a few heads of the snake are removed from post for gross misconduct.

 

I'd disagree that this should not be responded to - a lot of ordinary doctors will see this, and the implicit message the article is sending - to stand firm behind the psychobehavioural approach - will not be missed. I'm not sure critical letters to the editor will be published but think it's worth a try.

If epigenetic regulators & synapses turn up in further genetic studies then we can expect a lot of breathless psychosomatic commentary on that. There are already lots of quacks who have latched onto epigenetics for their own ends.

The authors' criticism of the current NICE guideline as "outdated" is a ludicrous inversion of reality - it is their model that has been tried unceasingly for decades; it is their model that has had exclusive backing from the NHS & the medical establishment; it is their model that has been implemented in all the clinics. The NG206 approach was a novel one & a response to their failures.

What seems to happen is that psychosocial approaches are overtaken by developments: historically with e.g. H. pylori and even psychotherapy for asthma (it was said that when Roger Altounyan tried to set up an Intal trial in the US, the psychotherapists tried hard to stop their patients from participating). More recently, psychosocial weight-management programmes look like they're beginning to fall - even Weightwatchers is apparently shutting down, a consequence of the rapid uptake of GLP-1 agonists, and weight management has until recently been about as psychosocial as it is possible to get.

 

I doubt it receives anything directly. It is an organ of the BMA - the doctors' union - and will get income from subscriptions

 

No, that was apparently somehwere in Liverpool. This BMJ piece mentions the NHS NICPM service in Leeds.