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

Any guess at what a detransitioner is?

 

When I googled it, I got «cessation or reversal of a transgender identification or of gender transition, temporarily or permanently».

But I don’t think it’s that!

Edit: maybe it is, but I have no idea about why they would be making that comparision here.

 

No I guessed they meant something else too , maybe it’s one of those in-group terms.

I hope it’s not inappropriate to say (just one of those memories that gets reminded of things) but reading it (the reply) reminded me of the cadence of the verse at the beginning of Michael Jackson’s earth song

https://www.youtube.com/watch?v=XAi3VTSdTxU

 

The insinuation is that both pwME and trans people are mentally deranged, and that those who recover/detransition and return to healthy normality then face being "silenced" by activists who supposedly want to prevent other sufferers from realising that recovery is possible.

 

I think so as well. There is a considerable overlap in the psychiatrists who psychologise and stigmatise ME/CFS with the psychiatrists who intentionally stigmatise what they call “gender dysphoria”.

 

I believe the comparison they are making is that people who think the mind body approach helped them recover are 'shut out' of the debate on ME/CFS in the way that they (imo falsely considering the situation in this country and elsewhere) claim that the small proportion of people who transition and then go back to their birth gender for whatever reason are 'shut out' of the trans debate.

As I've said I think this is a spurious argument based on a false premise. In fact in both cases, the 'mind body recovered' and the detransitioners, their voices are amplified by media and institutions who want to paint them as a far larger and more vocal group than they actually are.

It may bear remembering that Britain's most prominent 'gender critical' personality wrote a book a few years back where she portrayed pwME and other chronic illnesses in a very unflattering light.

 

Wessely was appointed to some big review of trans health care last year...

 

I don't want to speak for anyone else, but there have been quite a few posts implying that some significant research results will be out before the end of the year...

 

Thank you! Its appreciated.

 

DecodeME will be out this year and JE has speculated that we might know a lot more in general by the end of the year, but my impression is that it’s just an educated guess at most.

 

yes, that's what they're referring to--those who "de-transition" from being trans back to their original gender. The analogy makes sense to me. In the trans debate, many trans folks reject the accounts of "de-transitioners"--either saying there are only a handful, they weren't really trans, or whatever--or criticize news stories discussing de-transitioning and so on. This person is saying that those who profess to have been cured with mind-body approaches are treated in this debate like de-transitioners are treated in the trans debate--their testimony is dismissed or ignored.

I disagree with this person's critiques, but I can understand why this person would feel that way. I also responded to them, but I think I misinterpreted part of what they were saying, so I might need to edit my own comment.

 

And thanks to @Jonathan Edwards for his robust defense in response to comment! Jo, I think this is your first comment on VB??

 

she did? was that one of her detective novels, I think?

 

If that's the case, then Jo and Michael Sharpe have something in common. I was astonished once to see a comment from Sharpe fact-checking another commenter on a post. It was the first time I realized he was actually reading what I wrote.

 

To be clear, I have been making optimistic noises. This is on the basis that we have seen a preprint from Zhang et al. (a group including Maureen Hanson and Michael Snyder) with pretty convincing evidence of both immune and nervous system genetic risk factors for ME/CFS. If the data were easily interpretable I think we would be home and dry in answering FWM's misconceptions. ME/CFS is, pretty much, a real disease. The only problem is that the methodology used by Zhang is convoluted and we have been finding it hard to know exactly how to read the data.

DecodeME will report fairly soon, I am led to believe as an advisory board member. I have had access to some preliminary information that is confidential but whatever it shows I think we can be reasonably sure that when we have access to both these studies it will be easier to see the real picture, whether they agree or disagree. I am confident that the Zhang study indicates that ME/CFS is a partly genetically determined illness. By the end of the year I think we are likely to have a better idea of the detailed biology. I hope Chris Ponting would be happy for me to quote him as saying this isn't just about one study. It is about a range of findings finally providing us with an overall picture.

 

OK I laughed out loud at this one.

 

If I din't know you better David, I would wonder whether this is not a somewhat gratuitous comment.

But Sharpe has previously claimed that I have been 'disloyal' to colleagues, reminding me that we are both associated with the University of Oxford. (Nevertheless, of the various august institutions I have spent time learning things at Oxford probably comes bottom of the list in terms of Alma Mater - that title is shared by Cambridge and Barts.)

 

And as someone pointed out to me when I made the same mistake, an acronym is an abbreviation that can be used as a spoken word - as in NIMBY. BMJ and KFC don't count.

 

Ha! No disrespect intended!!!! Merely an observation!!

 

Thank you all for educating me.

I agree that some people dismiss people that recover and attribute it to mind-body approaches. And some of those dismissals are on the wrong grounds.

But it makes no sense to ignore the glaringly obvious flaw in their claims: the causality. Apparently, the mind-body proponents want us to not only believe their claims of recovery (fair enough even though most require you to say that you have recovered even if you haven’t really - i.e. lying, so who knows if it’s actually true), but also to believe that they have caused their recoveries themselves.

If only they could stop with that nonsense, I would be more inclined to listen to them. In the meantime, I don’t have the energy to waste on people that don’t want to stick to the facts, and prefer only their own opinions instead. So in my view, they are the cause for their dismissal, and they can end it instantly by going back on their claims of causality.