Firestormm - I'm sorry to hear of your experiences, but I still don't accept that ME cannot be treated as a physical illness, and that we have to conjoin the mind and body treatment, so its - hang on we'll just forget the body treatment and let the psychs do their thing in this country??
What good is that to me and others who don't have any mental health issues?? I say it again, is any other physical illness treated like this? I'll answer for you, NO
Thanks. I dare say people will be gaining some comfort from Lady Mar's words this morning, but I wanted to say something more about the matters being addressed here, and by UKXMRV following your post, if I may.
If this goes a little awry, it's because these same conversations are happening all over, and I am seemingly having several that repeat themselves - so please bear with me if you would.
You know in my 15 years of endurance and survival, I have often pondered if 'modern' medicine ever really moved beyond
"an aspirin and sympathetic ear" metaphorically speaking.
It took me a long time, and was only achieved in my 10th year I think, having returned to Cornwall being unable to cope with my ME unsupported and alone and having struggled stubbornly with independence, to gain some greater relief from prescribed medications for my ME symptoms - some of them anyway.
This aspect of clinical care is indeed sadly lacking. I think sometimes that we are led to believe - childhood memories perhaps - that once upon a time our GP would have been more able to get to know us, to understand us, and to be in a better position to diagnosis and prescribe accordingly.
You mentioned 'postcode lotteries' and this is true. It is also true that GPs have between 5-10 minutes allocated to them for each patient. The pressure on patients - like me - to try and keep to the time-frame is not conducive to healthcare in my opinion.
If I want that 'sympathetic ear' I am now referred to a counsellor or psychologist or clinical psychologist - for help with living with my disability. If I have specific problems as a result of mental health I might be referred to the mental health team.
But we are not unique in this treatment, not by a long shot. And we shouldn't associate our own experiences with some generalised statement that services and treatment for ME is in anyway unique - unless we know that it is.
Lady Mar says I understand, that without Wessely and the 'psycho-social' approach people with ME would receive better treatment. My question is '
What treatment?'
There is a distinction that I think needs to be made and always borne in mind but that seldom is:
the difference between clinical treatment and care - and scientific research.
You mentioned MS. In my county, when I was better able than I am now, I used to be driven each Friday to the
Merlin Centre where I had a small office and helped (well I like to think I did) a small neurological charity. We aimed to bring together all neurological conditions and their respective charities locally, and represent them collectively to raise awareness and improve healthcare provision for all.
Now, I can tell you that no other neurological condition (long term condition as these things are categorised in healthcare), had a specialist service, led medically by a consultant immunologist, and supported by specialist GPs, Consultant Occupational Therapist, Occupational Therapists, Consultant Clinical Psychologist, Physiotherapists, and Dietiticians.
Not a single other condition had that support in one place, that delivered care across the county in local community hospitals and was able to provide home visits. Not one. But 'we' did. ME did. I say 'did' because we don't have that same structure, funding or resourcing any longer - it's a mess - but they are still providing a service that no other condition has.
When the MS Centre (above) opened, it followed years of fundraising and voluntary effort. Years. I have worked with and spoken at length with people who have MS as their primary diagnosis. When this place opened it was to them a 'godsend'. But why? What does the Merlin Centre provide that the NHS doesn't?
Is it better drugs? Is it better diagnoses? No. It is support and care and understanding. This is something that patients themselves wanted to be delivered in one place - and they travel there from MILES away. Believe me. MS is known about, it has a cause, it has treatments that are targeted (unlike our own), with a greater or lesser degree of benefit, and yet patients still need that 'sympathetic ear' and help and suggestions; that they don't feel they get from the NHS provision.
They also come for physiotherapy including Graded Exercise, psychology/counselling including CBT - but in the main it's a place for socialising in-between these treatments. Oh and Oxygen Therapy - sorry forgot.
Oh for sure, they'd like more access and involvement from their Neurologist (some had never seen one!), they'd like more medical involvement period. But - and from what I do know about other conditions - this is the same across the board.
I recall one old gentlemen. Great guy. Wheelchair bound. He told me of how it used to be. He'd been diagnosed 40 years ago or something, and yet had never had the support that this Voluntarily staffed centre has provided. Never. Not from the NHS or elsewhere.
Our options in terms of pharmacological management - which is what I would say this whole thing boils down to - excluding of course 'anti-depressants' [shiver] is limited. Sure we can be prescribed things that might alleviate some of the symptoms that we suffer - as I now have - but nothing has yet been invented to target the condition itself or the constituent parts - even if they were known!
It is essential I would argue that medical specialists are retained in ME Specialist Services - if only for the purposes of diagnosis and prescribing of those medications that might help and that 'sympathetic ear'. We do need to do all we can to ensure better diagnosis but we also need to ensure that we are managing our condition in the best way possible - and if we do fall foul of a co-morbid mental health concern - that we have access to mental health professionals also.
But those psychologists and counsellors should be retained and involved in our primary care needs - expressly for purposes of helping us to learn how to live with our condition at a clinical level. These kind of practices are not unique to ME. What about 'Pain Management Clinics'? Are they 'pants' too? And such interventions are not always delivered by psychologists either - Occupational Health Therapists deliver Activity Management, Pacing, GET whatever you want to call them too - as will medical doctors similarly provide advice.
Anyway, do you know the estimated extent of misdiagnosis in Epilepsy? It is 39%. 39%!! And that's for a condition that should be objectively tested for - (though the test is far from conclusive). That's roughly the same rate as for ME. Makes you think, doesn't it? Are we really unique? Are other conditions jealous?
Getting a diagnosis - an accurate diagnosis - is a comfort I agree and having it communicated to you in an educated and helpful way is a must. But such a thing is harder for ME than it even is for Epilepsy it would seem. There are non-mental co-morbidities surrounding ME - POTS might well be one that affects some people, and through better education we might hope to ensure these are recognised and treated accordingly; however calling for psychologists and the like to be removed from the equation is not conducive to the system and it would leave patients who can take advantage and make use of these services - bereft.
What do you do though when you have been treated with drugs as much as you can? There is a brutal saying I sometimes use with myself and indeed has been used with me too:
"YOU HAVE ME. LIVE WITH IT!"
And, on occasion, I need help to learn to live with it. And that help is not always contained in a medicine bottle. Talking to someone will not cure me, but it is a relief nonetheless.
There is a whole system at work in healthcare. And you have to fight, it seems for everything. And that is wrong - especially for those who are not able and end up having their voices unheard. We see it all the time - yesterday it was about the lack of compassion in Nursing for example.
In Science - well - that there has been a preponderance of psychological research is a given. The balance was indeed out of whack for a long long time. I have been more than open about my feelings for the PACE TRIAL. But I still want as many people from as many different backgrounds searching for clues that might lead to answers.