George Monbiot on ME/CFS, PACE, BPS and Long Covid

It's what I noticed, although we're labeled as a mental health problem it's important to recognise we're not treated as mentally ill people are. Nor are we allowed any if the services available to the mentally ill. We've fallen down a crack outside of usual practice. Which is as Wessely and Co desire, as there are no rules and codes of practice and no oversight from regulating bodies.

 

A lot of people hold views like those seen in the comments of the article. I think they're completely natural comments from random people

 

How people with Long Covid are now also struggling to get clinicians to understand the use of language to describe chronic & multiple symptoms:

https://twitter.com/user/status/1382453863232507913

 

Ensure Friend and Friend’s friend have the following available at all Consultations:

Long Covid:

ME/CFS:

https://www.nice.org.uk/news/articl...ach-to-the-diagnosis-and-management-of-me-cfs

 

That looks like poor advice, to be honest - specifically the bit parroting CG53. It's too weak a warning to be much use.

 

yes, a team effort, we all have a part to play.

One thing that I think people sometimes forget is that this is a public forum and as such new threads/threads are much more visible and get picked up on searches outside the forum.

It is a powerful tool.

I remember years ago at the other place that there were a few 'complaints' about my posts about what BPS people were saying about us, that it was too depressing. But it became clear that we needed to know.

Like this one:
https://forums.phoenixrising.me/thr...-2017-a-day-with-the-mupp-ets-and-more.51518/

Obviously that's not the case on this forum!

 

I wouldn't worry too much. Comments under articles about all sorts of things are often awful as the trolls and those who disagree are most likely to post.

 

I don't think folks out there are necessarily shitposting, or that there is some kind of "organised campaign" to put positive stories about CBT/GET out there. Those experiences are likely real, and there are probably more of them than we think. It's just that a lot of people keep quiet about getting well again because of the negative responses they get.

It doesn't mean they weren't really ill in the first place, or that they "never had CFS/ME" (I'll use it that way round because that's what many are diagnosed with). It just means that everyone's experience is different, and that we are still a very, very long way from working out what this illness is.

Unfortunately for us, many of the narratives have stuck - and the reason they have stuck is that provide seemingly valid explanations for many people. They fit with their experience, so that are taken as true. It's confirmation bias in action. And then it becomes a battle between whose "lived experience" is more valid. In a world where moral attitudes are mixed up with medicine, those who get well are always going to be taken more seriously than those who don't.

 

It also infuriates me is that it is clear from some of the comments about therapy from places like Kings that what they are now offering is much more like pacing than what we have been led to believe CBT/GET consists of.

See this example (from the comments):

 

Because, in a meaningful way, it's true. We've seen how the fact that symptoms have a psychological aspect can be misused to justify quackery, but if that leads to patients arguing that human symptoms are somehow entirely detached from human psychology then it will just encourage people to think that criticism of work like PACE is unreasonable. This is an area of discussion where it's easy for people to be misunderstood, and that doesn't really do us any favours, so I think it's best to avoided.

Yeah. I worry that some patients concerned about PACE etc are so used to talking about these issues with those that they agree with that they can end up a bit detached from the culture around them.

I did have a worry that the “illness without disease” paragraph in the Monbiot article could trigger that sort of response. IMO that is the weakest area to raise concerns about and it very often leads to getting bogged down in the sorts of discussions that go nowhere.

 

I think it is far more to do with the fact that gaslighting requires victims to be isolated away from anyone and anything that might provide sanity checks of what is being fed to them. Psychiatrists will understand that as well as anyone.

 

But we also don't get good evidence of harm from those studies. Maybe some people are getting real improvements and some people are being made worse, and you end up with a result that looks similar to nothing much happening?

To me it seems likely that lots of people within 'ME' have different things wrong with them but at the moment it's difficult to say what meaningful subgroups there are.

It could be that those able to recover via psycho-behavioural means are a distinct sub-group, but I think it's a bad idea to combine that speculation with criticism of psycho-behavioural rehabilitation as that just looks like a post-hoc dismissal of a reported success of psycho-behavioural rehabilitation.

 

The widespread poor methodology in studies of psychobehavioural interventions suggests difficulty obtaining positive results otherwise.

 

Because even the PACE authors themselves acknowledge that it is very difficult to measure.

It's possible, but probably not helpful to say that. It looks too much like denialism. It also depends how 'recovery' is defined (as well we know). From what I have seen, most of those reporting 'recovery' also seem to report they are back to 90% - so not 'fully recovered'. But if calling themselves 'recovered' helps them in some way, who are we to argue?

 

One of the reasons I left the ME/CFS Facebook groups was that I was tired of arguing with some of the members there about the psychological aspect. Some people were sure their illness was caused by emotional trauma accumulating over the years (or over generations, or happening in their childhood), others with pre-existing PTSD and depression told me that psychotherapy helped their symptoms and vehemently defended ME/CFS as something similar to their psychological conditions. In certain threads I really felt out of place and in the minority with my virus-triggered, "definitely not psychological in any way" illness and all this psychobabble was really not something that I needed from an ME/CFS support group, so I left these (even though you could find plenty of people with viral triggers too of course).

I'm aware of the huge variations in symptoms but it's a mystery to me that we can perceive our illness, and the nature of our illness so very differently. But the point is, there are definitely a significant number of people in the community who interpret their illness this way. So I'm not so surprised by those comments, having seen this myself in the groups.