Briefing paper for parliamentary debate.

I feel the need to say that I completely understand why IiME would not put their name to this document. Any document about ME that has a recommendation stating: “Recognize that ME is primarily biological, not psychological, in line with a growing international consensus” is not something I would want to be a part of. PRIMARILY? Really? Talk about leaving the door open for psychs! Not to mention the sanitizing of decades of biological research that already exists going right back to Ramsay....

And also let’s not forget that Action for ME have still not called on the PACE Trial to be retracted. But that’s for another post.

It might not sit well with everyone but the truth hurts. And the truth is that patients have been shafted for decades by the likes of AfME and other charities. I’m glad we have one that will stand up to them.

 

Why are M.E deaths not mentioned? I would think that it's crucial to mention those to get across the outrageous situation we are in. Merryn Crofts family would surely support as they want to do all they can for M.E patients. Ian Rudds? The harsh truth needs to be told. Why is it being held back @chicaguapa or anyone else involved in putting this document together?? M.E in it's severest forms can be fatal. So why is that not included. Some of us are fighting for our lives.
Also, I see on page 9 of the briefing document 'Development of a clear strategy for research on this condition which could include......' Could?? I would have thought the word 'should' be more appropriate.

 

I'm unsure about that statement, people like Nigel Speight have used that terminology primarily biological or physical , probably in context of refuting the psychological assertions and allowing for recognition that ME can be impacted aggrevated by stress or so on. Equally it is true that there's a growing consensus. However that also allows the impression that it's been fair to treat CFS as psychological until recently, it hasn't and the choice of "primarily biological" instead of IOM speak "serious systemic disease "is weaker and less emphatic.

 

I've also seen that language before and I wonder if the people using it realise that by saying that ME is 'primarily biological, not psychological', they're saying that it is positively partly psychological.

'Primarily' means 'mostly' or 'mainly', which means that there remains a smaller part that must be composed of something else.

So if something is 'primarily biological', what else is left but 'psychological'?

Anyone dealing with a chronic disease will be under psychological strain and may have psychological problems as a result but that doesn't mean that the disease itself includes a psychological component.

I wouldn't like to see that wording used again.

 

Sasha, you have articulated that so well. I completely agree. I am almost afraid to watch the debate....I fear where it might go.

 

My impression is that people aren't understanding the implications of the language that they're using, because it doesn't reflect the views I've seen them express elsewhere.

But they need to pick up on this and make sure it doesn't happen again, IMO.

 

The whole 'psych vs bio' thing is just a language minefield, and worth trying to just side-step imo. It so often causes us trouble, and so rarely (ever?) seems to benefit us.

 

We're living in a world (thanks for nothing, PACE) in which the default assumption for many people is that we have an entirely psychological condition. If we want medical and not psychiatric treatment and to stop research funding going down the drain on psychological research instead of biomedical research, I honestly don't see how we can avoid the issue.

 

Just point out the problems with the psychological research and arguments that are used to make exaggerated claims about the importance of the psychological aspects of CFS.

I see no reason to take a position at all, particularly when the evidence is so weak.

Anyone who tries to argue that there is 0% of a psychological aspect to CFS will make themselves look unreasonable and ideological driven (human sensations have a psychological aspect, unless you try to define away 'psychological' to the point where it's meaningless). I think that we're best being agnostic on this point, and just battering down any specific bad arguments and quackery that pops up.

 

We should be comforted by the fact that the Countess of Mar's new advisor is happy to see further psychiatric research provided it is accompanied by her speciality of bioethical research.

"To ensure that patients receive optimal care for MUS, we must pursue not only psychiatric research, but , more importantly, bioethical research...."

There's no accounting for taste.

 

Would it not be easy to remedy this particular issue very simply by just omitting 'primarily' from briefing document, edition 2?
Depends on what the writer of this section meant to convey I suppose. I would be happier if the word primarily was omitted.

 

So is a broken leg partly psychological?

 

The state of having a broken leg will have psychological aspects to it. That's certainly not to say that psychological care should be routinely provided to everyone with a broken leg though!

 

And that's the key distinction. One can argue that the state of having any disease or injury will have a psychological aspect to it but there's a huge difference between saying that and saying that a disease or injury itself has a psychological component in its cause.

You wouldn't say (I hope) that MS is only primarily biological or that cancer is only primarly biological. We shouldn't be saying this about ME when there's no evidence whatsoever of a psychological component to the disease (not the the state of having the disease).

 

Can the briefing document be amended or is it now set in stone? Anyone???

 

I think that I'd also avoid saying MS or cancer do not have a psychological aspect, as to me those labels apply to the state of having the condition as well as just the biological processes of the disease. It also wouldn't surprise me if psychological aspects played some role in how those with MS experienced their symptoms. One could argue that 'psychosocial factors' plays a role in peoples' risk of developing cancer, by affecting their life-style choices. I feel like that language around this whole area can be so slippery that it's just best avoided. Also debates about the meaning of 'psychological' can be pretty dull, and distract people from more important matters.

Additionally, we don't have a good understanding of the disease mechanisms that lead to people developing ME, and the uncertainty there makes it even more difficult to get the language right. It isn't like we can just point to a broken bone and say 'is that psychological?'

I think that we can all see how the 'psychological vs biological' debate has been used by the PACE researchers to distract attention from the problems with their work, and portray their critics as unreasonably ideologically opposed to behavioural interventions. Has bringing attention to the 'psychological vs biological' debate ever done us any good? Personally, I doubt it. When other people bring it up, it's worth having some understanding of the issues here so that responses can be provided, but I see it as being a topic that we're best off avoiding.

 

http://www.margaretwilliams.me/2018/highlights-of-prof-anthony-komaroff.pdf

I have literally only just seen this but a quick glance at page 1 is very relevant to this conversation.
I am seeing my MP and will find it very hard to explain 'primarily'. Do we know why this was included?

EDIT: Prof Komaroff writes of " robust biological abnormalities." Perfect timing for the debate. Can someone send it to Carol Monaghan? I am away and will be on a boat in the Atlantic with no wifi from tomorrow morning.

 

That's where we differ, and I think it's very important that that conflation is avoided. Perhaps that's the basis for others using the offending phrasing - but they need to stop it, because it's based on an imprecise use of language in the context in which they're using it.

 

Particularly when we don't have a good understanding of the biological processes which lead to people suffering from ME/CFS, and the diagnosis is based upon somewhat arbitrary criteria, I think it would be difficult to have people use the label of 'ME/CFS' (or any of the alternatives) only to refer to the biological processes underlying the disease, and not the experience of suffering from the condition. To me, it seems that the 'MS' label tends to be used to refer to the condition of having MS, not just the biological processes underlying the disease. It had been my impression that this was just how the words were used, rather than being a recent conflation of two distinct ideas.

 

It doesn't seem that way to me at all.

Doesn't 'Cancer is partly a psychological disease' sound wrong to you?

Anyway, I'm off to bed.