No time for a proper post, but re providing psychiatric care as standard to those with chronic health problems, I think that all need to recognise how controversial this area is, and that many psychiatrists are concerned that there is currently a push to over-medicalise people's responses to difficulties. Having seen how the NHS operates, I think it's best to be very cautious about placing people under any sort of medical care, and that this should generally only be done when we have a good understanding as to what is wrong, and really compelling evidence that the treatment being carried out is beneficial. A lot of researchers will have a pet theory, and it will generally be possible for them to produce studies which give a misleading impression of their own expertise and value for helping patients - it looks to me that this has been done for psychological interventions for a wide range of patients - and certainly for CFS. That's not to say that there are no people with cancer or CFS who would benefit from CBT, but it is to say that we should be aware that the benefits are often exaggerated and the harms ignored.
Generally, the people working on designing and analysing CBT RCTs will be CBT therapists... I think that it would be better if RCTs were designed, run and analysed by those who had no role in designing or carrying out the therapies assessed. I think L Jason did and RCT testing Anthony Cleare's CBT for CFS, and found it to be ineffective (sorry got to get off PC, so I've not checked details, and could have got them wrong).
Really complicated topic though, and I'd be very cautious of accepting claims of efficacy made by any particular study.
There is a quote I rather like. Taken from the ME Association's 'Clinical Issues' guide for clinicians and written by Charles Shepherd and Dr Abhijit Chaudhuri Consultant Neurologist from Queen's Hospital in Essex:
Therapeutic nihilism is no longer an option - there is a great deal that can be done to improve the quality of life for these patients...
The thrust of this clinical guide is to try and cover the missing content in NICE with regards pharmacological interventions with symptom management.
Not in a way that says one (or more) is better than the other but that all should be considered, that there are things out there which can help relieve some of the symptoms attached to this condition - and simply talking about it all need not be the only option.
There is a movement in the psychiatric/psychological world that is trying to offer more support with long term conditions - as seen in that paper I was talking about provided by IVI about Liaison Psychiatry above.
There does seem to have been in recent years far more caution expressed by GPs to prescribe medication and to review what medication one is on - most notably pain medication I noticed - but anti-depressants are being drawn into the spotlight and anti-biotics (more recently).
I want more people to be afforded the consideration in relation to drugs that I have - and what I am taking now is not necessarily all that is on offer - but I want to see GPs and certain specialists at least have the knowledge and willingness to prescribe and not to see 'therapy' be offered as the only option in e.g. the NICE Guideline.
The only drug mentioned in that best practice guideline is an antidepressant - which might have been determined to help also with pain management and indeed with sleep - but there is far more in a GPs medical bag than that which should really be highlighted.
Yet the NICE Guideline even is not compulsory. GP commissioning groups and GPs themselves are not obligated to adhere to anything in that document - not even the criteria.
In some areas of this country, therapy is being offered as the only intervention for people with my condition and in other conditions also - but for them it is after (basically) medicine has said 'we can do no more mush - you're on your own'
So, yeah, I do get it. How could I not after 15 years? I just will not turn my back on any help offered out of principle alone. A principle that some seem to advance of certain discipline involvement denigrating the reality of my condition.
I think such people are wrong. There is a lot of crap misinformation out there on the internet about who said what to whom. About motives and such. Personally this kind of nonsense drives me straight into the arms of a therapist i.e. it will drive you nuts this endless back-and-forth.
Outside of scientific papers outside of a world seen by some as flat and viewed by them in monochrome - there is the real world. If you don't have a GP who can afford you the time, if you don't have an immunologist or other medical specialist who is available, if the only specialist you do have access to (and not everyone by any means does) is a psychologist or an occupational health therapist - then working with them does not denigrate the reality of the condition.
If a patient with a diagnosis of ME finds some measure of help from meeting with a therapist or indeed as a result of seeing a psychiatrist - then who are we to question that? Sure when talking about quantitative proof for the protocols being advanced, when it comes to PACE and anything else - then we can talk about the claims being made - but on the frontline and in the trenches I don't think we have any right to question someone in the way that gets done at times.
I might not believe the headlines behind the PACE trial but that doesn't prevent me from accepting a referral if one is made to see e.g. a clinical psychologist who might (might) draw on the principles of CBT in working with me. Similarly, if I were to be referred to an occupational health therapist who draws upon the principles of GET (just as everyone else does in various ways including those lofty medical consultants I have ever seen) then I will listen to what they have to say, discuss my concerns, and take from it what I can and try to do what I am able.
I have said before, that 'modern medicine' seems to be going full circle. We seem generally to be returning to much that was dismissed when drugs took over. It seems we jerk from one extreme to another sometimes at least at the level of generality.
In the ME world it is true that we see far more papers from psychologists and psychiatrists I think that from what are collectively termed as separate specialists - the 'biomedical' cabal. These more noble individuals who are to be our saviours. Whose very presence on the stage causes desperate people to sit up and soak it up.
But these lofty types are few and far between and despite promising hope and answers they've produced buggar all in reality. And man, that's depressing. After 15 years of this too-and-fro that's more than depressing - that's providing no damn hope at all.
So much for 'modern medicine'. So if nobody minds I shall take whatever help in the trenches is on offer. It's better than lying here
waiting for godot.
But be in no doubt if I ever come across any shrink who speaks of cures or exaggerates my chances at recovery based on me doing it all myself - then I will treat them just as much as I treat those 'biomedical' lot who make similarly unsubstantiated claims based on lotions and potions and a belief that they are right - but just can't prove it yet.
Fire