|The pandemic has affected, and continues to affect everything.|
2020 was an awful year – yet 2021 seems to be eclipsing that in many ways.
We are not sure to whom we can accredit the image to the right – yet it sums up much of the experiences and frustration.
However, despite the constraints placed upon everybody, the charity has continued to work behind the scenes and our suporters continue to achieve amazing things.
|The charity has commented extensively on the NCE Draft Guidelines for ME and was assessing the embargoed final NICE guidelines which were to be formally published on 18th August. Then, as we were writing the newsletter, NICE pulled the publication – further breaching trust amongst people with ME, possibly its own guidelines development regulations and certainly damaging further its dubious reputation regarding ME, .|
We immediately issued a statement on this and have followed up with a letter to NICE management.
However, we do need to look at a bigger picture than just an establishment-biased UK scene.
Our conference weeks in 2020 and 2021 have been impacted but the charity still managed to stage a successful #BRMEC10 Biomedical Research into ME Colloquium in June, as a virtual event.
Over one hundred researchers from more than a dozen countries registered for the two-day Colloquium and, working closely with the European ME Research Group (EMERG), we were together able to create a varied and challenging event that has led to progress and more collaboration. EMERG produced six hypotheses which formed the main part of the agenda.
The charity has played a major role in the European ME Alliance (EMEA)’s recent ME/CFS in Europe Roundtable which was initiated with help from the European Federation of Neurological Associations (EFNA) and included representatives from WHO, European Commission, NIH, EMERG, European ME Clinicians Council and industry and many other stakeholders.