I think it might be useful to copy my reply to Charles Shepherd here:
Thanks for the comments, Charles,
Perhaps I can take them in order.
I am aware that resources are limited but my impression is that at present large sums are wasted on a rehabilitation approach inappropriate to ME/CFS, and that a physician and nurse specialist model would involve considerable savings. This is also the view of the large community of patients I interact with.
I am sure there are components to care not covered in our suggested format, but I am not clear what you are referring to. We have focused on severe and very severe. Children and young people with major issues like safeguarding are managed by a paediatrician as far as I am aware. Relapses are covered by the format of our suggestion and not by a rehab model. I am not sure what co-morbidities you refer to but most listed in ME/CFS literature have a doubtful evidence base.
S4ME members and I do not think that slavish adherence to what is in NG206 is a good way forward. I think we are agreed that it involved significant compromise.
The suggestion of keeping away from off-label prescribing came from the patient community and not me. Patients are fed up with being encouraged to try experimental therapies that don’t work and cause adverse events. I think they are right. A main reason why we have no licenses for treatments for ME/CFS is that physicians use them off label rather than doing trials. When the research working group looked at re-purposing drugs there was no enthusiasm for anything except naltrexone (now in trial). The reality must be that nobody really thinks other drugs often used have a useful impact. There are situations where extrapolation from standard indications makes sense, such as use of beta blockers for tachycardia. However, the chances of doing harm with more experimental treatment has to be higher than the chance of benefit. That is the approach we used for all rheumatic disease by the time I retied in 2010. There is nothing anomalous about it. In the 1980s things were different but we learnt the need to be more careful the hard way.
The individual examples of off label prescribing people relate to me are all to my mind unconvincing. The Bergen team experience has shown that major remissions occur just as often with a placebo as with a promising test drug in a blinded trial. If anyone seriously thinks modafinil is useful then why was a trial not suggested at the research working group? Antivirals have been pretty conclusively shown not to work. Pheresis techniques can produce major morbidity, and Long Covid physicians are seeing that currently.
I have given this issue a lot of thought and have seen no reason to change this position. And, as said, this is the overwhelming consensus amongst the patient community I talk with. They want things done properly.
You mention being fortunate in seeing a hospital infectious disease physician – I am not surprised. And we agree that the extended nurse specialist role has been very successful. Where does NG206 not recommend this model? It does not specify any particular team as far as I am aware. Other professionals can be brought in if there is good reason.
The fact that there are very few physicians left is surely the problem to now address? Since 2003 there has been encouragement of a rehab model based on deconditioning and it is time to admit that this was a mistake and that the previous physician-based model that you enjoyed was the right one. What is the point of having a plan for a new start if we stick to a broken system? Finding physicians will not be easy but I have recently seen first-hand how the current model perpetuates that problem even when a keen candidate is available. And the Suffolk team took years of fighting to get Luis Nacul back in place. There is no point in giving up before we start, surely?
Nurses have little training in ME/CFS, for sure, but there isn’t that much evidence-based material to learn, beyond reading one of the recent information sheets – awareness of environmental sensitivities, the problems of PEM etc. They are not involved because everyone has assumed patients need exercises. Education of nurses across the board is a big task but it will only happen if hospitals have staff committed to ME/CFS. The current situation is that ME/CFS is excluded from the experience of hospital professionals – with the result that when someone with ME/CFS is admitted nobody has any idea how to manage their problems. This seems to be another powerful argument in favour of the model we are suggesting.
The suggested model in no way removes involvement of dietitians and OTs, who can be brought in where needed – most likely consulted by the nurse specialist when concerned. What patients do not want is more appointments to see a dietitian and then an OT. They want a single professional to interact with as far as possible.
What role is there for physiotherapists? I do not see any significant role that cannot be dealt with by a nurse specialist. Physios get people to do exercises. That is not what is needed. The BACME Guide to Therapy shows that they have no therapies to offer – there is no explicit mention of any therapy in it.
So there is no suggestion that patients would be referred to general physio or OT departments. The nurse specialist would get input and make sure that needs were properly understood. A key point of the suggested model is that people with ME/CFS are protected from exposure to misguided therapists. We don’t need to waste money on salaries for a string of therapists who are dedicated to an ME/CFS service but may slip back into old habits. The BACME Guide makes this point well (even if in relation to absent content) in suggesting the ‘interdisciplinary’ approach where a single professional can cover all we know about good ME/CFS care. We both know a nurse eminently capable of doing that. Access to a counsellor might also be good.
In summary, I would question this idea that people with ME/CFS need the ‘same sort of multidisciplinary referral service’ as those with other diseases. When I entered rheumatology, I was constantly referring to therapists. By the time I retired I had not made a referral to a physio for ten years. I made use of OTs but no OTs were dedicated to rheumatoid. This idea seems to me largely a myth, (there are diabetic nurses but not diabetic physios as far as I know) and one that can get in the way of planning a streamlined and effective service.
There is a political shift towards community care, but from everything I see it is a disaster and will inevitably be reversed. GPs are already being hired by hospitals to provide a non-emergency generalist service. It is the only policy that makes sense. I think it would be a tragedy if health care for people with ME/CFS was stuck for another ten years in a model that makes no sense because of political correctness and accounting artefacts to do with contracts.
As I have said, the position I am taking is not mine alone. It is the position argued out by a hundred people with ME/CFS over a long period of time. There are a few who would like experimental treatments, but a much larger population have been there and regretted it. It is also in keeping with my experience as a physician caring for people with disabling disease over decades, and the evolution of care towards a more focused, evidence-based model.
Best wishes. Jo
