No. It was a response to an analogy that I didn't think was appropriate to ME at this point, and as I said, more's the pity.
I can't help but think you have me down as a supporter of NICE and/or the IOM contract: even as a supporter of CBT, GET and Activity Management.
I want a multidisciplinary approach available to patients with a diagnosis of ME such as it is at the point we are at i.e. without a biomarker and test.Such as happens or is meant to happen with Parkinson's Disease and MS.
I would like the primary physician (GP) to feel confident in making a diagnosis of ME, of carrying out tests to rule out other possible explanations for the symptoms, and of being able to refer onwards to either a specialist team in relation to the ME or to other specialists if tests or his opinion lead to alternate diagnoses.
I want every single person who claims to have ME to have a definite diagnosis - such as it is - and I want data to be collected to permit large-scale epidemiology study; and studies that follow progress etc. As was recommended by NICE but NEVER acted upon.
I would like the specialist ME team to confirm the diagnosis - based on their experience in dealing solely with people with ME - and I would like all teams to include representatives from associated and important disciplines e.g. neurology and/or immunology, occupational therapy, and yes, psychology (you may now sneer). All specialists should be available - if the patient wants to visit with them.
I want the specialist team to use their expertise to again 'filter' the patient and ensure they do not have some other explanation for their symptoms - which may change at each consultation - and that might lead to a treatment which could relieve them of those symptoms and return them to a more normal existence.
I want the specialist team to help the patient learn to accept their disability, to accept their life with ME, and to help them make adjustments to their homes and their way of living, and to help them with any needs in relation to claiming benefits.
The specialists should be accessible and approachable and if a patient is having problems with others in their life accepting that ME is real and devastating, the ME specialists should be able to listen and help work with those others to make them more aware.
I certainly want medical involvement in any specialist team and for all patients to have access to that consultant - who should be able and willing to prescribe (through the primary or lead physician) symptom management drugs. This consultant should also be willing to try and discover if specific signs are the result of something other than what is believed to be ME, and this might involve additional testing.
I want a clear clinical guideline, I think it is necessary and important. Something that all doctors can use to try and ensure each and every person diagnosed with ME can feel confident that they have it.
The guideline - and resultant training - should leave the clinician in no doubt that ME is real and devastating and what it means for the patient to know that there is no cure or specific treatment but to also be aware that there is much the clinician can do to help alleviate some of the symptoms and to remain ever vigilant for alternate explanations.
I do think that the most generally applied 'treatment' is a series of methods that can best be described as 'illness management' or 'symptom management'. I don't believe therapy is the only answer that should be afforded in relation to illness management.
My biggest criticism of NICE was that it didn't advise doctors on the various drugs that could be tried to help alleviate some of the symptoms - I think it mentions only one (or possibly two) drugs in the whole of the guideline and one is certainly an antidepressant though prescribed I think for pain and/or sleep. I am not talking about experimental drugs thought to tackle the disease itself - I mean drugs that are available generally and that could help alleviate symptoms.
I also don't think NICE paid enough attention to patient sensitivities and intolerance's with regard especially to drugs, and given that it mentions only one or two drugs in the entire Guideline, the weight applied to anti-depressants (even if the main intended relief from the drug is not relief from depression) was far too great.
Ideally I'd like to see 'illness management' relate more to activity management (which having now undergone some therapy in this regard is I think more akin to pacing) but which embraces some of the principles of CBT and GET, rather than have the three therapies separate.
And I'd like to ensure that specialist provision is available to at least everyone who has 'moderate' and 'severe' ME should they want to use the service.
Specialists should be funded to make home visits. This again is something that NICE included in its Guideline though I understand regional funding is being blamed for home visits not happening everywhere or as often as is needed.
I'd like to see patients able to attend specialist provisions e.g. medical consultations and therapy and receive home visits, for as long as the
patient wants them to continue. Again funding means that access is limited and necessitates a fresh referral to a provision should a patient be discharged and then, for example, relapse and need that specialist help once more.
NICE referred constantly to a 'personalised' approach to clinical care. That means an individual should be treated as an individual. We might all have a diagnosis of ME but we are all different.
Physicians should feel confident to treat individually as well as collectively according to a Guideline and not dismiss an individual with a diagnosis of ME if they present with new or increased symptoms.
Anyway, I must get back to bed. This apnea and my epilepsy is driving me nuts lately though not as much as I suspect my views are driving you
