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She has tweeted about the UK goverment current ME/CFS consultation.

No mention anywhere I can see of PEM. I think if someone has frequent migraines they are likely to be fatigued, suffer brain fog at least during the migraines, unrefreshing sleep and obviously headache. Not difficult to see chronic migraines being misdiagnosed on this definition as CFS.

Quackery against ME/CFS in New Zealand Blog by Nina E. Steinkopf Quote: The following is offered as information to anyone who is considering recommending or attending Mel Abbotts “Empower Therapies» as treatment for ME/CFS. Mel Abbott is a certified Neuro Linguistic Programming (NLP) and...

Moved posts Is Tymes Trust still functioning? I was looking for up to date material on kids with ME recently and found all their leaflets had not been updated to refer to the 2021 NICE guideline rather than the old one.

Tweet quote: I find this quite shocking. This is a non-clinician advising a lot of very sick people to follow her path through expensive experiments with no foundation in research efficacy for pwME. Tweet quote: Tweet quote: I have no problem with people choosing to spend vast amounts on...

I just received another one in the post from Berkeley. Straight into the recycling. I do understand that @dave30th has no power to stop this.

The number of comments is shown on the page headed What's new. There are 323 comments so far.

The interview with Akiko Iwasaki was good, nice clear listing of various hypotheses about what's causing Long Covid, including microclots (probably a downstream effect of something else), persistent virus, reactivation of herpes viruses, particularly EBV, leading to autoimmunity particularly in...

How not to run a clinical trial!

An article about technobabble: Technobabble and tenuous terminology: the use of pseudo scientific language

They are completely convinced that FM is a psychosomatic disorder. Lots of stuff about childhood trauma, lack of ability to form attachments and express emotions etc as causing FM, rather than as results of FM.

Why would a donor give a quarter of a million dollars to a couple of patients experimenting with a random selection of treatments and encouraging others to do so in an unscientific experiment? I hope the money is tied to commitment to handing over the so called research to responsible clinicians...

Moderator note: Please keep the discussion focused on the thread topic, specifically UK disability benefits and any proposed changes and consultations. This will make it easier for members with limited capacity to keep up with important developments. Discussion of issues such as treatment of...

This bit makes complete nonsense of the so called study: Of the 44 patients randomly assigned who completed baseline assessments, 21 patients completed the study (14 in the standard care group and 7 in the study group). So fewer that one third of those treated with Gupta blah blah actually...

I've just looked up that study. It's a complete joke: A Mind-Body Technique for Symptoms Related to Fibromyalgia and Chronic Fatigue March 2012 Loren Toussaint et al. Abstract and Figures Context A novel mind–body approach (amygdala retraining) is hypothesized to improve symptoms related to...

I think do a test now, don't wait. Apart from sensible stuff like resting and staying well hydrated, I think the only advice we can give is to consult your doctor.

Anyone up for writing to the researcher to tell them they must use clear diagnostic criteria and objective outcome measures, and suggest a before and after 2 day CPET? And to warn them about the long term damage they may do to pwME who try to stick to the program and ignore their symptoms...

My brain's on a go-slow day, so not a good one for trying to get my head around this study. What follows it a bit of a muddle and ramble, feel free to ignore or tell me where I've gone wrong. As far as I understand it, they asked the patients to fill in a bank of questionnaires on the first...