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I think if that is intended to include Long Covid ME/CFS is could be a reasonable estimate, but I agree it shouldn't rely on a single research finding.

So are they talking about 'effort preference'?

I agree. I noticed that too. I haven't seen any evidence of psychological factors affecting prognosis. Adverse social factors I can see having an effect, for example poor housing, financial deprivation, family and work pressures, all affecting the ability to manage activity and get sufficient rest.

https://meassociation.org.uk/wp-content/uploads/2025/07/PROGNOSIS-PERMANENCY-AND-QUALITY-OF-LIFE-IN-ME_CFS-JULY-2025.pdf PROGNOSIS, PERMANENCY AND QUALITY OF LIFE IN ME/CFS What to expect following a diagnosis of ME/CFS in terms of disability, improvement, recovery, and quality of life Free...

All sorts of symptoms 'could be' generic symptoms of lots of conditions, but that doesn't mean PEM is. As far as I am aware no other condition besides ME/CFS has the particular pattern of exertion induced delayed crashes way out of proportion to the exertion and lasting days, weeks or longer...

One potential problem with twin studies for ME/CFS is that the healthy twin may be just as genetically predisposed to ME/CFS as the other one, just hasn't yet had the right trigger, and may never do. I guess that's the case for all genetic ME/CFS studies. All we can say is that the healthy ones...

If you want to discuss the details of any research paper, it's best to start a thread on that research paper in the relevant subforum.

As I understand it the usual terminology is twins, which can be further detailed by adding fraternal or identical if they are the same sex. If they are opposite sex they are obviously fraternal.

Indeed. We get people coming to the forum with such theories every few months. The process is always the same. Start with an idea, then look for evidence to support it, and join the dots with lots of assumptions. I am reminded of scientists whose strategy for testing a hypothesis is the...

Crosssposted with your previous post. I have attempted to begin to understand your theory by reading your opening post earlier today. I went back a bit later and found you had edited it again, but with no indication of which bits have changed. In the space of 2 days we already have over 100...

Hi @nataliezzz. I see you have edited the opening post to provide a large amount of text and links to research papers and to your social media threads. Just working through all that would take me several months of concentrated effort. I don't have the capacity to do that, but would like to...

I'm imagining informal chat in the staff room between therapists running different arms of the PACE trial. "How are your patients getting on?", "They don't seem to be getting any better", ... The statisticians being blinded to grouping is irrelevant. It would have been the principal...

I find your logic hard to follow. You might just as well claim ME/CFS is caused by migraines, since a lot of pwME get migraines, or that IBS and ME/CFS are the same condition because some pwME have IBS symptoms, or that GERD causes ME/CFS since lots of pwME have acid reflux. Overlaps in symptoms...

If you want members to read information you have posted elsewhere, it's best to post it here.. If it's long you can copy and paste it into a series of posts. I personally can't really take in information that is split into a series of short posts on Twitter or Bluesky. Turn it into an article...

Thanks for joining us, Trent. I am much reassured. I wish clinicians dealing with people with ME/CFS showed such sensitivity and eagerness to listen and learn.

I haven't seen any attempt to answer this fundamental question if the hypothesis is to be worth exploring. If there is no evidence apart from an anecdote or two of some improvement in some symptoms, then the hypothesis is a non starter. The thread title is: Upper Airway Resistance Syndrome...

She refers to 'per protocol' for what patients would have to do with the device, but doesn't say what the device is. The survey is just a quick one about whether people would participate and how much money they would need to be paid to participate. How can you know if you would participate...

But is OSA well recognised to be associated with other symptoms of ME/CFS other tahn fatigue? If not, how can your theory explain anything to do with ME/CFS.

For the GWI data, it only finds a higher prevalence of sleep apnea after they got GWI. There's no mention of it predisposing to or causing GWI. Maybe the GWI triggered the sleep apnea, or maybe the pwGWI were unable to exercise, put on weight and developed obesity related sleep apnea. Or...

They seem to operate a hierarchy of truths where their truth is the truthiest truth..., their anecdotes are the truthiest anecdotes, their feelings are the truthiest feelings...