United Kingdom: News from Forward-ME Group

If by provenance you mean where is it from, I assume it is genuinely from Bateman Horne. If you mean quality assurance then, having just looked through, I think it is terrible. It is a sort of BACME Guide to Therapy for biobabblers. It rambles on about politically correct concepts and then plunges in to make believe pathology and treatments.

I did mean "quality assurance".

IF "provenance" can have both meanings, then I suppose thats not obvious enough. I recognise "quality control" as a function within a municipal organisation. And the NHS monitors for some quality control. So does Sainsburies. Quality control is woefully lacking in many organisations, charitable and clinical.

I am not familiar with the usage of "quality assurance". I could use a handier word than control & assurance. A handy word for the unspecified quality marks being assumed - whenever preliminary, contrived or low-grade indications are dressed up. As if proven by the "evidence-based" label.

Such endorsements; supposed to have evaluated the evidence in question. Supposedly vetted as an authentic conclusion. Given pause for thought, I replaced "provenance" with "quality", since my sense of "provenance" was obscure. The closest I can find for its other usage is:

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Data lineage > Data provenance:

In information systems, data provenance is information about the entities, activities, and agents involved in producing a piece of data;

- it records how data was derived and can be used to assess quality, reliability, and trustworthiness.

Provenance > Date provenance:

Scientific research is generally held to be of good provenance when it is documented in detail sufficient to allow reproducibility.

Scientific workflow systems assist scientists and programmers with tracking their data through all transformations, analyses, and interpretations.

Data sets are reliable when the processes used to create them are reproducible and analyzable for defects.

Security researchers are interested in data provenance because it can analyze suspicious data and make large opaque systems transparent.
 
I see that Forward-ME has a website and lists its member organisations.

One of the members is the Patient Advisory Group for the ME Research Collaborative.
PAG support patient-centred biomedical research into ME, using its diverse voices of patients and carers to advise associated bodies and platforms. PAG were Co-Chairs of the Research Working Group for the Department of Health and Social Care’s ME/CFS Delivery Plan.
It sounds as though this group has been influential in making policy affecting people with ME/CFS.

The link for the organisation goes through to an AfME page - here
There is no information about who is a member of the group or who represents them on Forward-ME. There is no information there about the selection process for getting onto the PAG. I have seen something suggesting that the MEA has run the selection process in the past, but they are not now an organisation I would trust to select good quality members.


Forward-ME says one of its values is

Integrity and Transparency

We act honestly, ethically and in the best interests of people with ME, communicating clearly and maintaining transparency wherever possible.
I think part of that transparency and accountability is making public who the representatives taking part in Forward-ME are.
 
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