This is the problem.
I haven't really changed my mind about my reservations about this Open Letter but at least for the minute it looks as if it may be me that is trying to provide some sort of draft protocol.
I have been talking to most of the relevant people and will talk to more. Interestingly, perhaps the most relevant person, who might be expected to suggest some additional protocol detail has indicated that they think the NICE Guideline says what can be said and that the real problem is that people with ME/CFS are not being diagnosed with ME/CFS. That is the main reason why they are not getting adequate care. There is no problem about knowing what to do. Adequate nutritional supportive care is the same as for any other situation.
All the relevant people in the UK you can think of are thinking about this problem and having meetings to discuss what to do but nobody has any idea what needs saying - beyond the NICE Guideline. But I think there may be something useful to say and I am working on that. The aim would be to have a model protocol available by about the end of June, accessible to everyone and freely open to published comment from everyone.
Thank you, Jonathan, for trying to take this forward. I agree with your stance on the likely helpfulness or not of this open letter and that the current NICE Guidelines undoubtedly say what can be said on this, given the current state of our knowledge on causation.
I can also attest from personal experience of my late wife’s case, that what your ‘most relevant person’ identifies as the main issue ‘not being diagnosed with ME/CFS’ is in the right ball field, but needs I believe, further unpacking given our own experiences.
My late wife had a long established (1991) diagnosis of PVFS/ME of physical causation from Dr Weir. She shortly after developed severe food and chemical intolerances and was referred by Dr Weir to Professor Brostoff who confirmed the PVFS/ME physical diagnosis but added Food and Chemical Intolerances of unknown physical causation as a recognised complication of the primary diagnosis PVFS/ME of physical causation. This complication added considerably to the difficulty of living with PVFS/ME as like with ‘Effort Intolerance’ the only management technique for dealing with ‘food and chemical’ intolerances were to identify them and limit exposure to them.
This was extremely difficult to do, but with help from Professor Brostoff’s team which included a nutritionist, exclusion and challenge exercises were undertaken to identify the worst culprits and they were removed. It was also established that exposure to any food or chemical on a daily basis quickly led to that food or chemical being sensitised to. Further investigation established that tolerance was largely but not totally maintained if foods (and chemicals/ medicines) were rotated on at least a 7-day basis preferably on an 8 day basis.
Needless to say this resulted in a very restricted and difficult diet to obtain, but we ensured it met the nutritional need and it kept my wife alive for a further 25 years and importantly, well enough to enjoy some quality of life. As with PVFS/ME regular setbacks/downturns occurred and the identification and exclusion of foods and chemicals (which included all medications on any regular basis) had to be repeated.
Throughout her life with this illness our biggest difficulty was not getting a diagnosis of PVFS/ME or ME/CFS or CFS but recognition of it as an illness with unknown physical causation. Much more often than not other medical authorities we encountered in different situations applied a psychological attribution to the causation and tried to treat accordingly on the basis that her physical symptoms were not real ie she could undertake exercise, eat and drink normally and tolerate standard medical protocols for the relief of pain etc.
The problem was not the name given to the diagnosis but the perceived causation held by the Doctor giving the diagnosis and their willingness to respect my late Wife’s ‘competence and right to choose’ her medical treatment. Far too often, most especially in Hospital situations including end of life care, the Doctors did not respect my Wife’s expertise in managing her illness or the ‘physical causation’ applied to her full diagnosis of ME/CFS with Food and Chemical Intolerances. Even when provided with written evidence of continuing care of ME/CFS etc as a physical illness at Consultant level they chose to ignore that, without explaining their reasons for doing so.
Our protection, such as it was, was to invoke the law around ‘informed consent’ directing these other Doctors to 2 legal judgements. The first of these concerned the need in law for Doctors to explain the evidence on which they relied to substitute their own diagnosis over a pre-existing diagnosis and the second which confirmed in law the ‘competent’ patients right to choice ie the right of the patient not to undertake any treatment they did not want and to have all medical views and risks associated with any and all views of their illness explained to them.
My late wife was always, ultimately successful in obtaining her treatment of choice, especially when we actually had to go to law. This was because of two factors. First the historic primary physical diagnosis of ME/CFS predates the later psychological attribution to the illness and second we found that in legal settings the psychological view was unable to explain or point to any evidence which supported that view, whereas the physical causation could. Third party independent legal judgements in our experience always dismissed the ‘psychological view’ of ME etc as being unsubstantiated when the physical causation of ME had also been diagnosed and presented.
You are quite right to point out, in another related thread, that the new NICE ME/CFS guidelines have now adopted/adjudicated the medical and legal validity of Medical Professionals recognising, diagnosing and treating ME/CFS as a primary physical illness of unknown causation.
Unfortunately, our individual success and in my raising of it with the GMC and other medical bodies has not yet changed the diagnosing and treatment behaviour of those Doctors who continue, without evidence, to attribute a psychological causation to ME/CFS and in certain situations seek to remove the patients or their guardians right to ‘informed consent’ and ‘choice of medical view and treatments’.
I wish you well in your efforts to develop a protocol as although (like the new NICE Guidelines) it may not be implemented by all Doctors it will add a very important something for the patient to ask for. Please PM me if you think any further information on our personal experiences may be helpful to you in your efforts.
