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Donna Brown, Camille Birch, Jarred Younger, Elizabeth Worthey UAB Medicine Link to the abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) also referred to as Systemic Exertion Intolerance Disease (SEID) or Chronic Fatigue Immune Dysfunction Syndrome, is a disabling and...

It's the sort of thing that's been associated with quackery. Still, aspergillosis is definitely a real thing. Assuming there is no straight out lying, then the black stuff in the pictures doesn't look healthy - so maybe there is something here? Obviously though, I don't know enough to pick out...

In 2015, while I was living in Australia, I was tested for rickettsias, and tested positive to an active infection. It was never investigated further and I was never treated for it, despite my debilitating 'ME/CFS' symptoms. I think no one really knew what to do. I wasn't able to get my...

A paper from a team with links to Austin Health in Melbourne which mentions a new clinic for functional neurological disorders. The thread mentions some people in Australia of interest to ME/CFS advocates. The relationship between psychosocial trauma type and conversion (functional neurological)...

Donated, thanks for your work Keith.

:eek: what do we know about this? A couple of the researchers have links with Austin Health, Heidelberg, Melbourne. Oldmeadow, is a BPS leaning doctor with links to Austin Health. An unusual mix of authors from Melbourne (Australia) and Egypt. @Joan Crawford - I'm thinking that you will...

It looks like quite an honour, and perhaps creates opportunities for Maureen to push ME/CFS and Long Covid forward as issues that need attention. I think Maureen is a deserving recipient of the honour - her team's research work is always sensible and solid, as is her advocacy.

There's a Medscape article: https://www.medscape.com/viewarticle/949982#vp_1 Looks like there were subjective symptom reports - it looks as though this is what is being commented on as nonsignificant: It's noted that this was a short study, and so it doesn't provide information about...

Yes, it is odd. From the editorial, mentioned in Ryan31337's post above: I'm not sure what is meant by 'orthostatic symptoms', but the abstract doesn't mention any subjective outcomes being measured. The writer of the editorial seems very impressed, calling it a superb study. Maybe it's just...

@Ravn, you expressed the feelings I share about ACT for ME/CFS very well. And @Robert 1973's letter is great. I think this study is a reaction to the realisation, expressed in the draft NICE guidelines, that CBT is not a treatment for ME/CFS. So here is this new thing that can be rolled out...

In response to multiple suggestions, the moderation team considered merging this thread with the thread on the Clock study Non-hospitalised Children & young people (CYP) with Long Covid (The CLoCk Study): 2021 Stephenson and Crawley. However, we think the topic of the labelling of young...

Yes, it's not really a problem. If there is one study with an endorsement from a well-recognised national patient organisation and another with an endorsement from a regional patient organisation, then the first study should score better on patient engagement. And then there's the question of...

Slighty off-topic, sorry, but I'm concerned that Crawley and others like her will adapt their research to fit with some of the ten priorities identified and continue merrily on, sucking up research funds to produce misleading and damaging rubbish. One suggestion I made to the Australian health...

Are respondents allowed to suggest 'nothing by Esther Crawley'? Is it time to ACT? A qualitative study of the acceptability and feasibility of Acceptance and Commitment Therapy for adolescents with CFS:2021 Crawley

Can you explain that a bit more please Snow Leopard?

That would be one way, and I expect it would be ethical if you were clear with the participants about what you were doing and the doses were within the range of normal use of household products. There are Material Data Safety Sheets that record known risks from products - so an easier way than...

As much as I think this explanation for seizures would be cool, the study design leaves me a bit dubious. They appear to have found a correlation between essential oils and epileptic seizure onset (and break through seizures in known epileptics). Firstly, in the abstract they don't tell us how...

It's hard to know what was going on without seeing the actual data. https://www.ecco-ibd.eu/publications/ecco-news/item/y-ecco-literature-review-eathar-shakweh.html At that link there is some analysis of the study which sheds a bit more light. There were complications such as the improvement in...

How about that quote for ground-breaking discoveries @Woolie ? So, they found that only 15% of adolescents had clinically significant anhedonia, as measured with their questionnaire (which by the way was the "Kiddie Schedule for Affective Disorders and Schizophrenia (K-SADS)" - a triumph of...

A post on a patent by Fluge and Mella related to killing plasma cells has been moved to a new thread: Patent: Method for the treatment of CFS using an inhibitory or cytotoxic agent against plasma cells, 2021, Fluge, Mella