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The difference though is that the label ME/CFS makes no claims about cause or treatment, whereas other labels such as MCAS do. It's a bit like if we decided that we actually had a disease: 'Microclots Everywhere'. There is a possibility (increasingly remote) that microclots are the cause of...

Well, it's not sounding good. But, I don't know, how much evidence do we have of higher rates of mortality from cardiovascular disease in people with ME/CFS compared to people without ME/CFS?

I love the term 'activity rationing', it makes so much sense. It is hard to imagine the rehab people being delighted with it. All the more reason to use it.

Thanks SS. That sounds potentially useful for some ME/CFS studies.

If AfME is responsible for advising the 'Parliamentary Champion' MPs on the questions, then they seem to be proposing that there are two separate health conditions - ME and CFS. And, unlike the UK government, they aren't using ME/CFS. Given the Royal College of Physicians' Special Edition...

I've only read the thread, but what is going on with the two-day CPET? They mention they tested twice, but then don't seem to tell us anything about variation between the results from each test. Are the results presented from Day 1, or Day 2, or an average? Any one of those options seems odd...

Posts on the utility of salt for dysautonomia and OI have been moved to Salt

HOM, I'm sorry. I'm sure it hasn't been a comfortable experience, you mentioning that you have an MCAS diagnosis in passing and then reading that many of us here have doubts about the utility of the MCAS label, and getting drawn in to a debate about it. That is not an ideal start to being on...

Yep, the passage I quoted was from a public thread - here - and there was no response from you to that. (If there is an up arrow on a quote and you click on it, that takes you to the post.) I see a similar point was made on a Members Only thread about the Big Survey, and there was a reply...

That most pwME might be grateful that the patient experience articles were included is a substantial part of the problem. Oh well, we might think, at least it's one step forward, maybe the RCP with its editorial subtitled 'debunking the myths of functional disease' is actually on our side and...

Sigh. It's just an ongoing nightmare. Ref #25 is Casson S, Jones MD, Cassar J, et al. The effectiveness of activity pacing interventions for people with chronic fatigue syndrome: a systematic review and meta-analysis. Disabil Rehabil. Nov 2023;45(23):3788-3802. [doi: 10.1080/...

This is a Norwegian study although variations of these treatments are being offered in many countries.

But, apparently the RCP like having the patient perspective included in their campaigning. So, at the very least we should be able to clearly say 'we don't want what you are offering'. And point to the Magenta study, among others. Organisations like the RCP like to have pet patient...

I'm not sure that I understand why she isn't in a position to help. Can you explain? After completing her PhD and this work with the RCP, she became the recipient of a post-graduate fellowship from the Foundation for the Sociology of Health and Illness in order to do more work on shame in...

I should say, one thing I liked about Katharine's paper, and something that I don't think has been discussed much, is her contention that people with ME/CFS tend not to be big users of the health system. The RCP obviously doesn't believe that, but it was good that Katharine made the point.

Responding to this, yes, I have read some editorials for special issues. For some of these, there has obviously been a public call for papers on a topic and the editorial addresses the collection of papers that have been submitted. For others, the editor has an idea of the story that they are...

This is very good. We have discussed the Strategic Research Hub before. There were some concerns about some of the researchers lining up to be part of the Hub e.g. Tyson and also around the logistics of it. It's hard to know if the potential upside from a coordinated effort outweighs the...

Thanks Arfmeister I believe that things like prednisone can induce feelings of wellbeing and high energy even in healthy people. So, I think that needs to be kept in mind when evaluating the impact of these drugs on people with ME/CFS. I'm actually surprised that there isn't a higher...

Diagnostic criteria are for diagnosing someone with a disease/disorder. Clinical guidelines are to help health care professionals care for people with a disease/disorder e.g. how to diagnose, how to treat and support. That 2024 review is a mishmash of trendy speculations, poorly put together...

I suppose, playing devil's advocate back, it could just be as simple as being just a result of deep sleep involving relaxed muscles and reduced muscle activation (which it does). So, perhaps there is a risk of everything becoming sluggish and not enough oxygen getting to the brain during these...