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Yes, I get that, but if you don't compare genetics of hypermobility with and without hEDS additional symptoms, how will you know whether the genetics is different for these 2 groups? If they turn out to be the same, that would suggest something else non genetic triggers hypermobile individuals...

Would it be better, in terms of genetics, to select the sample by taking a large group of undifferentiated people, say adolescents in local schools, and testing them for joint hypermobility, regardless of whether they have any other symptoms or conditions. You would then have a sample you could...

To save people bothering to read the Guardian article, it's about politics and the decisions politicians make on funding public services, not about the effect of Long Covid on people's health and ability to work. Long Covid doesn't even get a mention.

I think we should avoid emotive words like misunderstood, ignored, unexplained, under-researched in any umbrella term if we must have one. They too easily invite either dumping in the psychosomatic dustbin, or assumptions that patients are whinging again. It reminds me of my frequent misreading...

I also dislike the idea of grouping conditions according to what seem to be arbitrary criteria. Long Covid is an unhelpful name because it encompasses too many different problems that appear to have been triggered by Covid infection that may have little or not overlap in pathology or symptoms...

Some posts have been moved to a new thread: ME/CFS diagnosis and management among topics at free Pulse virtual event for GPs, Dr Alastair Miller, 24th March 2026

Well said, @hotblack. It baffles me that doctors and therapists who claim to understand ME/CFS just don't get that.

I have just been looking at my fitbit heart rate graphs and summary data for each day for the last week or so. Steps are non dominant wrist movements It tells me for each day: resting HR, lowest and highest HR, and time spent in different heart rate zones: light up to 88, moderate 89 to 98...

Thread about the study here: Associations of Depression, Anxiety, Worry, Perceived Stress, and Loneliness Prior to Infection With Risk of Post–COVID-19 Conditions, 2022, Wang et a I wouldn't draw any conclusions from that study. As posters on that thread point out, it's not sound science.

I can't read the article, as it's paywalled. The intro bit I can read starts by saying the partner suffers from anxiety, PTSD and ADHD. From the title it seems this serious set of problems is manifesting as very severe anxiety about catching Covid. I think in that context it is highly...

Sometimes I find I need the angry and anguished posts in a forum discussion to help spur me on to constructive action. All posts, whether diplomatic or not, are part of the process that leads into the production of the more diplomatic letters sent from the forum. If we see each post as a...

I agree in principle that we should try to be collaborative and diplomatic rather than confrontational, but that is largely up to individual members' style of communication. The moderation team do not tone police. That's not our job and would be impossible anyway as one person's confrontation is...

I'm really sorry to hear your GP is so unhelpful. If you don't have the option where you live of changing GP, I still hope the sort of consultant led service we are suggesting might help. I would hope knowing there is a consultant service to refer pwME might prompt our GPs to start referring us...

I don't understand. What is H4ME? I haven't heard of it.

I agree with Murph that it's good that people with medical and/or scientific backgrounds are setting themselves to work on reading recent research and on hypothesis generation. I found it interesting, drawing together some of the research we have discussed here and using the obesity analogy. I...

I think all we are asking for is more openness from advocacy organisations, including ensuring they keep their public records up to date on their websites about their views, actions and processes, and including being prepared to listen to, and ideally participate in, discussion of their roles...

We list in our forum values: The mutual support and respect work both ways. Sometimes people come here to share ideas or projects and can't take any criticism and go off in a huff, others welcome it. I don't think we should stop criticising just because some people don't like it. I have...

Russell Fleming is listed as Project Manager on the MEA website. I don't understand where that fits in the new structure.

That sounds very like what we are objecting to from BACME. I commend her support for very sick people especially those on feeding support, but am sad to see people being persuaded to waste money on false hope from behavioural treatments.

It looks from those graphs that the main difference between the tests was that the placebo in the curcumin trial didn't register any improvement, whereas the other two trials the placebo showed as much effect as the treatment. So if the placebo in the curcumin trial had worked the same way as...