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via https://cfsme-registry.info

via https://cfsme-registry.info

via https://cfsme-registry.info [2018-02-23] Energy Status and MRS

The latter. That's the argument they tried to use to block Alem's request.

The more data that is looked for in one data set, the easier it is for them to claim participants are identifiable and hence they shouldn't release the data.

Shows the economic impact of the illness:

The Stigma Short-form scale I often find it useful in such papers to look at the wording of the questionnaires themselves. How they are described in the text may not as good as it could be...

https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME

https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME

2 critiques: Jason LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease Control's empirical chronic fatigue syndrome case definition. Journal of Disability Policy Studies 2009;20;93. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.508.1082&rep=rep1&type=pdf Jason LA, &...

Uses the Reeves et al. 2005 criteria which are generally accepted to be terrible. Found a prevalence for CFS of 2.54% in Georgia.

A lot of it goes on this research programme:

It talks about all sorts of economic burdens. If we are to get public health systems to pay for treatments such as expensive drugs, it is useful to be able to argue there is an economic case for it.

I don't think this is a good fit for "PsychoSocial ME/CFS Research" but then I didn't seem to fit in "BioMedical ME/CFS Research" either. I think there needs to be another category for research or else they are all collapsed into one, which would be my preference.

Here is a message I just received: --- An Appeal for Help with Llewellyn King's ME/CFS Alert videos: --- Dear Friends, I believe that there is a permanent social crisis: people who are sick but hidden in plain sight. People who bear perpetual disease with fortitude while living their lives on a...

I have no idea whether "person-centred healthcare" is interesting or not or what it might mean in practice. They don't give any other information on it I think.

Although the authors themselves may not have strong views, this mentions a lot of nonpharmacological interventions studies (e.g. on CBT) and claims they showed benefit in terms of QALYs. These are self-report measures and there is no mention that there could be problems with them.

Free full text at: https://www.researchgate.net/publication/320111650_The_economic_burden_of_chronic_fatigue_myalgic

There was this study from Australia:

This service: https://www.elft.nhs.uk/service/308/Chronic-Fatigue-Service