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Yes, it's so true that efforts to educate can be completely counter-productive if not done right. (And probably even sometimes when they are done as right as is possible). I do think that the fact that the document has been produced with the support of a number of patient charities, and those...

That's very useful context, thanks @Cinders66. I think though that we do need to worry about what sceptical doctors will think, because that is the audience that I think we are trying to persuade. They, to a very large extent, are the ones with the control when a person with ME/CFS is in...

And so too does CBT for ME/CFS, it has much the same components ('You are not a reliable interpreter of what you are feeling', 'You need to follow my instructions', 'You will only get better if you want to, and you put the work in', 'Your personality is the problem, and we can fix it'.) I...

Here's the link to the website: https://www.cognitivefxusa.com/ They are primarily a post-concussion treatment facility, and the 'develop new neural pathways' approach could make sense I guess. But the fact that the woman in the video above said that she had an fMRI done and it was all red...

For more discussion of the therapy promoted in that video see this thread: Cognitive fx - brain training

Yes, it's essentially an advertisement for cognitive exercise therapy. It shows really well how these behavioural treatments 'work': the desperate desire on the part of the patient to be well again; their appreciation of the therapists who are kind and validating and seem to have the answers...

It depends how much diagnostic effort is made. I think the evidence we have, from the NIH study (despite them having been carefully diagnosed by experienced ME/CFS clinicians, at least 3 out of 20 I think), the fact that some members here have gone on to be diagnosed with other things (at least...

Yes, I think, although I am not sure, that, regardless of whether someone has been recognised as having POTS or blood pressure issues related to standing, nearly all of the people in the sample would recognise symptoms related to orthostatic intolerance. For example, they would not like...

for P300 latency and amplitude: That's interesting.

For beta rhythms: It is hard to understand exactly what they are measuring: They seem to be talking about the power of the signal I'm not at all sure that a low powered beta rhythm is a bad thing. See for example this study on beta rhythms in language: “Too Many betas do not Spoil...

The difficulty of course is that "fatigue" can be caused by all sorts of things, including lung and heart tissue damage. This looks like a mostly older cohort, mostly male. So, possibly a lot of what we are seeing is the impact of a severe infection.

I'm not completely sure, but I think that if you ask the cohort to do repeated muscle contractions at a set percentage of their peak force, the average number of muscle contractions that they can make will be less than that of matched healthy controls. i.e. more muscle fatiguability Also, and...

You say "sleep disturbances". The CCC requires: 'Sleep disturbances' isn't really 'unrefreshing sleep'. Plenty of people with ME/CFS won't have recently had sleep quantity or sleep rhythm disturbances at the particular time you ask them about their symptoms. I have a bit of a problem with...

I think that is almost certainly unlikely to be true. When clinicians have done extensive and intensive investigations, they find that a significant percentage of people have other medical conditions e.g. the NIH intramural study. I think it's an important point for medical researchers to be...

Thank you @Nightsong, what you say makes sense. I suppose the writers may have been trying to convey a sense of 'don't leave it too late' in response to a feeling that that is what is happening, when what is needed is simply good clinical care applied without discrimination and with empathy.

I think there's been an undercurrent in a lot of the literature of, 'how can we tweak our FND offering so that the patients trust us and are grateful rather than telling us exactly where we can shove our functional diagnosis?'. And part of that has been understanding what patients are feeling.

Sounds like a good suggestion to separate out recommendations for more severely affected people. I don't understand your comment on this; can you explain a bit more? It may prevent some doctors taking the advice seriously, but is it not a reasonable recommendation? (Genuine question, I don't...

:D Well, actually, I was telling you that the total evidence base that I have seen for psilocybin, which includes this case report, taken together with the report from someone I know well adds up to 'not convincing'. I don't think psilocybin stacks up for depression either, although, whatever...

from a post elsewhere, also about the Clinical Management of Covid-19: Living Guideline document a warning against GET

I've mentioned elsewhere, I know of someone who has experimented with psilocybin, with no effect on their ME/CFS. I haven't seen anything convincing suggesting that psychedelics have any impact on ME/CFS.