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Are you referring here to clinicians or charity representatives?

That's a very bleak view of humanity. I prefer to see it as some people are awful and have power over others who they misinform and/or keep in ignorance for their own ends. I think most people are decent but ill informed and struggle to know who to believe.

Sorted.

From your description you are much less severely afffected, so are able to not only wash your whole body in one go, but also go in to town. It seems unhelpful to criticise what someone much more severely affected finds works for them.

I agree that permission to do less can be very helpful. In a way, having a physio saying that to a pwME and to their doctor, family, employer, school, carer, could be very helpful. Coming from a physio, whose training and expertise are usually seen as being about getting people to increase...

I think it happens to me more in winter, perhaps from breathing cold dry air at night the nose overproduces mucus to keep the inside of the nose moist.

I forgot to say I only shower on better days, usually recently about once a week. It wipes me out for the rest of the day and sometimes the next day or 2. I also have a problem of feeling cold afterwards for several hours even if I'm well wrapped up in bed and the room temperature is the same as...

I agree it's better than some other articles we've seen about help with pacing, but there are too many things that are concerning, particularly the claim that a physio can help determine when to increase activity. We have no evidence that's true.

The whole palaver around having a shower adds to the exhaustion. I get it set up earlier in the day, with floor mat and bath mat and stool and towels and clean clothes all set up ready. The tasks of undressing, showering body and hair, towelling hair and drying body, and dressing all having to...

You may find it helpful to check the diagnostic criteria recommended for clinical care in the UK and USA. Neither requires flu-like feeling with sore throat for diagnosis. NICE guideline, CDC IOM diagnostic criteria. If you want to discuss this, I suggest a thread in this forum: Diagnostic...

It is a good article, so why do I read it with trepidation? Perhaps because it has echoes for me of other series of articles that gather a following and create a prominent position for the individual as a spokesperson for pwME. Then the person happens to recover naturally while trying...

Thank you @mariovitali for responding to my question and clarifying your views. I'm afraid you are expecting more from me than I can manage. I simply have neither the capacity in time and energy, nor the background depth of knowledge to examine your research methodology to assess whether it is...

I think they try to down play the feeble between group difference in outcome by claiming it's a feasibility study. And not reporting on secondary outcome measures. The so called treatment seems to be a mix of self massage, breathing exercises and hot and cold on the upper spine. So even if they...

Thanks for replying, @mariovitali. A Merry Christmas to you too. I assume you are referring to my comment when you mention 'negative bias'. Yes, I do have a negative bias against promoters of unevidenced protocols who go all over social media encouraging very sick and desperate people to follow...

I note that you start with a comment on the personality and stated motivation of the creator of the so called Born Free protocol, Joshua Leisk. Of course you are free to do so, it's your twitter thread, not a scientific study, so up to you, but seems to me to be trying to set the scene for your...

For ME/CFS 'multidisciplinary care' in the UK seems to be a euphemism for don't bother the doctors, put a bunch of psychologists, physiotherapists and occupational therapist in charge to run short courses of psychobehavioural rehabiltation'. Some variation on CBT/GET.

Moderator note: Some posts have been edited or deleted. Please be mindful of these forum rules: Rule 1: Take care with comments to and about other people While vigorous debate and criticism of arguments is permitted, it should be focused on issues related to the aims of the forum. b)...

Lactose is a sugar found in milk. The enzyme lactase breaks it down to its component parts glucose and galactose. I think lactose intolerant people lack this enzyme. Lactate or lactic acid is an organic acid formed from glucose in anaerobic respiration.

They also need comparitor groups with other diseases. It may be simply picking up people who feel ill.

If people are to be asked to provide longitudinal data over years to get a really good picture of things like effects of long term pacing or not pacing, prevalence of big fluctuations, relapses and remissions as they occur in real life, then the it would not be ethical to ask them to stick to...