BBC Future is a branch of the BBC that provides a more in depth coverage of scientific and medical subjects than the BBC News website. This appears to be the first time that BBC Future has covered ME/CFS.
Dr Shepherd has written to Dr Cox, the journalist who wrote this article, as below. Dr Cox has replied and stated that he will organise a correction of the paragraph that has mixed up pacing and GET.
Dr Charles Shepherd's letter to Dr David Cox:
Dear David
Firstly, thank you for writing this interesting article on post viral fatigue conditions. We have shared it today on MEA social media.
I was, however, surprised and disappointed to find that there was no mention of any of the really important PVF biomedical research studies and initiatives that are taking place here in the UK, along with the DHSC Delivery Plan which covers ME/CFS research and is due to issue a final report very shortly.
To name just two world leading UK research initiatives:
1: The MRC funded DecodeME Study, which is collecting DNA samples from 20,000 people with ME/CFS to examine their genetic characteristics. This is the largest genetic study into ME/CFS ever carried out.
2: The ME Biobank, which forms part of the UCL Biobank at the Royal Free Hospital in London and is funded by the ME Association. The ME Biobank supplies blood samples and anonymised clinical data to research groups all over the world.
Also of possible interest:
MEA guide to the clinical and pathological overlaps between ME/CFS and Long Covid: Long Covid and ME/CFS – Are they the same condition?
Summary of treatments aimed at the underlying disease process in ME/CFS: Treating ME/CFS – Including research into new and experimental approaches
And please could you correct this paragraph:
Because of all this, an approach known as “pacing”, by which patients attempt to slowly work their way back to normal levels of physical activity by progressively pushing themselves to do more and more, does not always work. In some Lyme disease, ME/CFS and long Covid patients, their underlying dysfunction means that pacing can actually make them worse.
Pacing is the form of activity and energy management that is recommended by NICE and the MEA. It is graded exercise therapy (GET) that encourages people to do more and more. GET is not recommended because there is no evidence that it is effective and substantial patient evidence of harm.
MEA information leaflet on Pacing: Pacing: Activity and Energy Management
On a personal basis I regularly contribute to the BBC on news items relating to ME/CFS and would very happy to assist if you return to this subject.
Kind regards
Dr Charles Shepherd
Hon Medical Adviser MEA
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
