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

Yes, that is very good.

 

I appreciate that the opinion piece is odious but I am a bit sceptical that it will have influence. The doctors who already think this way will continue to do so. Both those with a more critical approach and those in the middle are likely to see clearly that this is a piece of waffle by some authors who, if they check the bios, have no real business to be writing it anyway. Moreover, it provides everyone with an explicit account of just how bogus this approach is. This is the way homeopaths have always argued and most doctors have been trained to pick up that sort of bullshit, even if many of them allow themselves to backslide when it is convenient.

 

I cannot put into words how utterly demoralising it is to see the BMJ not only publish but request this article, especially during ME awareness week. That timing cannot be an accident.

The most dangerous thing anyone ever gave me for my ME was false hope.

Even if we cannot hold individuals to account, there needs to be consequences for the institutions that have caused so much harm.

 

My life is considerably worse now because of the efforts of Pedersen in Norway.

The fact that this article exists is trauma-inducing in itself. It’s like letting an abuser break the restraining order every week, so the abuser can sit and yell more abuse at the abused for an hour. All because the abuser has power and is protected by friends in the police, and they insist on «dialogue».

 

Yes and whats worse the abuser is going round convincing everyone we're not to be trusted and they need to abuse us too for our own good...

I need to see a gastroenterologist and this is giving me even more trepidation. When I spin the wheel with doctors it so often comes up BPS.

 

And the worst part is if you’re severe is you know the abuser has infinitely more endurance and energy to keep on spouting his beliefs while it takes much of your day to counter what they wrote in 15 minutes.

 

It seems to me that this opinion piece is the authors pleading that people should listen to them; essentially "please listen to us, we have special knowledge that only we can share". If they were in a secure position of authority then they wouldn't need to be writing this appeal for people to take them seriously. While I understand how frustrating and triggering this will be for many, I view it as a pathetic cry for help from people who are becoming more and more sidelined.

 

Dictators use propaganda even at the height of their power. I’m not sure I would take this as a sign of their influence diminishing. But I hope it is!

 

Chat on Twitter has turned to legal challenge. I doubt it would eventuate but I hope the fact that is has been raised by multiple people independently might give the opinion piece authors pause for thought.

 

Heard it on bluesky as well.

 

I don’t disagree but it is a measure of the power imbalance that that even when being sidelined they are commissioned to write an opinion piece for the BMJ.

Here’s hoping that one day some of us will be commissioned to write an opinion piece for the BMJ on the institutional and individual failures which resulted in the systematic abuse of people with ME/CFS.

 

That’s the position I’ve moved to. Dying gasps of an old order under threat or even as it moves into irrelevance.

Not to be panglossian, the path to change will be long and we’ll no doubt face obstacles. But it seems we’re moving to a point where we’ll have the tools to overcome them and the general trajectory will be positive, rather than stuck facing a barrage of misinformation and psudeoscience.

 

Nope no over reading

it is indeed at best marking their own homework

 

That is exactly, precisely, it.

And, in addition, as the reply linked to by SNT above explains very nicesly (thank you Dr Chesterton), "the beliefs that others held about me and my illness: that I could get better, if only I reframed my own thoughts, or did more exercise, or exercised in a different way, or stopped focusing on my symptoms."

This affects all medical personnel. This is the harm that gets done. The abuser convinces everyone around the victim that the victim is responsible & thus results in no one who could help the victim actually helping them. The essential need for help is not given.

These beleiefs, naturally lead to people not wanting to inconvenience themselves to help you. So whethr I get the assistance I need from a relaitve who is married to a GP, will be directly affected by the bolstering of these ideas. I mean seriously... why should busy exhausted people give up their free time to help me, when i could help myself?

This is the harm that is done.

Indeed.

 

So do you think there is anything that I could be doing right now, to help my sensory intolerance?

When well rested I can cope with a certain amount but then as i begin to "tire" (hate using that word but among ourselves we know what we mean) everything gets louder & brighter and more painful, even while I'm really enjoying it & am gutted to have to stop.

So I dont see how I could use exposure to desensitise because the more i am exposed the worse things get, not the other way around.
But I'd do anything, and i mean ANYTHING to help myself. Is ANY of the brain retraining ideas worth trying?

 

David Putrino has posted on X heavily criticising BMJ article. Could someone who is on X ( I'm not) get this across here? I think we need all the support we can get. It's time the BPS lot learned that their time is past.

 

No I think the brain retraining ideas are based on prejudice and stupidity rather than either science or evidence. I don't think it is likely that any 'one' can 'do anything' to reduce their symptoms beyond the so-called pacing approach. I cannot stop my tinnitus either. But my hearing aids do stop it. So maybe there are evidence -based techniques which make scientific sense waiting out there to be found.