Dr Sivan has responded again. I am not sure what, if anything to say at this point.
Dear Jonathan
Thanks, great points, agree with most of them. I am conscious of colleagues' inboxes, so I will keep this brief and will not send further emails. I have added comments in blue (bold) text below yours:
Dear Manoj,
As someone trained in rheumatology and rehabilitation, I am quite certain rehabilitation is not the right approach for ME/CFS. Moreover, the patients are sure they do not want rehabilitation, having suffered so much from misguided therapies in the past. The point of our letter was that there still seems to be no insight from BACME into the fact that 'Rehabilitation’ has nothing to offer here - the 'Guide’ even has no identifiable therapy content.
Depends on colleagues understanding about "Rehabilitation". It is defined by WHO as "set of interventions to optimise functioning or improve functioning", and that is 90% of any healthcare activity. A person has hip replacement to reduce pain and improve function - that is rehabilitation. A person with cancer has tumour debulking and chemo for improving symptoms and function - that is rehabilitation too. Your open letter has been signed by a physiotherapist and psychologist - what they do with patients is improve function and that is rehabilitation. If we want to remove rehabilitation from the picture, that means RCP, RCOT, RCP, BPS, and charities all are out of this. I am sure you don't imply this.
ME/CFS is usually long-term, often life-long. It requires careful and repeated assessment for differential diagnosis, plus long-term support, including complex home care and nutritional support for the very sick. The clinical picture and recent genetics point to neural pathways so I suspect that neurology will be the long-term home. Unfortunately, neurologists at Queen Square are only now beginning to show some interest. The situation for children and young people is different - I see no reason not to continue with care under paediatrics and specialist adolescent units.
The set of interventions you describe here is all rehabilitation (according to the WHO ICF taxonomy). Neurology as a home will be great if they are interested. They are the ones referring the cases without proven biomarkers to us in neurorehabilitation.
In my view the conflation with post-infective illness simply adds confusion. The link to infection for ME/CFS is variable at best and makes little impact on understanding of the illness or management. Self-limiting post-infective illness, as for EBV and Covid, has been recognised for decades and I see no evidence for anything being beneficial beyond the passage of time. Symptoms may be similar and a small proportion of people prove to have long-term relapsing or progressive illness. Separating the two is part of the differential diagnostic process mentioned above.
DecodeME showed in 75% cases with ME/CFS, patients perceived the condition to be linked to infection. The other conditions you have listed getting better with time is absolutely untrue and there is adequate evidence to show that in a third of these cases, they become long-term conditions and cannot be differentiated from ME/CFS. Happy to send you all evidence on this (many of these are our own work)
The priority now is for NHS strategy to focus hard on the very severely disabled and especially those still dying from inanition, which is a scandal. The second priority is to fund some effective biological research to get some idea what might be useful treatment. The current situation is a mess, but I am sure a short-term ‘goal setting’ rehabilitation model is not the answer.
You cannot separate out rehabilitation from biological research as they are all integral and complementary. It is like saying we will do the hip replacement but will offer no therapy after surgery. We need both. I agree with your point on need for more biomedical research.
How will HERITAGE develop an evidence-based framework if we have no reliable data on efficacy?
HERITAGE is service delivery research not an interventional clinical trial.
In summary, we are all saying the same thing - we need biomarker research to form the basis of medical interventions (agree fully with that - we are looking at immunology and auto-antibody profiles in our ongoing research in Leeds, which will form the basis of immunomodulatory drugs).But we absolutely need rehabilitation - depends on how we perceive the word and whether we have fully understood the meaning of the term. The wider team needs to include basic science researchers, medics, nurses and allied health professionals - we need them all to solve complex issues patients have.
