Can I interject a tiny bit?
The main concern of NICE is money and cutting costs.
Not providing services.
They are going to be overly interested in the paper which says GET&CBT are best value for money.
Know your enemy.
I can't help wondering about all the incredibly valuable CBTherapists who are wasting their careers on this, when they are so short of therapists in areas where they can be of use.
I put a request to my gp for emergency counselling when my Dad was diagnosed with pancreatic cancer and I was "going under" trying to care for him, but in charge of major life and death decisions.
I was put on an 18 month waiting list.
When a drug addict (including alcohol) decides it is time to quit and they need help, they need it NOW, immediately.
It's a case of strike while the iron is hot.
Putting these folk on waiting lists will only give the impetus to quit time to dissipate and will reduce the hope of success considerably.
Would it help in any way to point out that other services could be seriously enhanced by having extra staff?
Therapists are not cheap.
There is an interesting economic argument here which is when there are limited resources how do you best put them to use. Even using the figures given in their paper the gains are very small so it doesn't make a good use of the limited set of resources. I think you could put a similar argument around GET, I believe that there is a shortage of physiotherapists.
To a large extent I think that the NICE guidelines around CBT and GET have been ignored. The damage they do is they impression they give to doctors. I believe that in the nice guidelines they say CBT and GET can be useful in helping manage ME. However, there is so much publicity around PACE and claims of recovery that doctors havn't got that message. Its particularly dangerous when doctors tell people to go and do some exersies. Or paediatricians start "graded attendance therapy" where the get parents to force children to attend school and gradually increase attendance even when it makes them ill - using the threat of child protection proceedings to do this.
This started me thinking what simple goals do we want to achieve. I wrote down a few goals as they occured to me to start a discussion:
1) Change the description of the disease to state evidence for immune system failures and neurological problems (as suggested in the latest highlight notice from the MRC). This could be critical in changing the perception of ME.
2) State clearly that there are currently no effective treatements just management strategies. They should point out that management strategies should be choices for patients. I would include pacing, GET and CBT here - I don't see them dropping CBT and GET hence I think it is important that they emphise the lack of recovery data. I also think management should include advice on pain (inc drugs), diet, vitamin suppliments etc
3) A commitment to review Rutiximab and Ampligen when further trials are completed and FDA approval given.
4) Strong statements around the dangers of exersise and things like graded attendance therapy particularly when badly managed. This kind of statement is supported by evidence of patients experiance from the MEA surveys and I believe that White or Sharpe acknowledged in an interview that exercise can be dangerous when badly managed. These statements should be backed up with pointers to evidence of immune system changes on exersise.
5) They need to say that patients with ME should not be sectioned.
6) They need to say that children with ME should not be subjected to child protection proceedings. I think the advice given in the 2001 CMOs report was quite good here.
7) Better differencial diagnosis - There are a number of papers around suggesting people getting to CFS centres should have had different a diagnosis (inc things like depression and sleep disorders), so I think work needs to be done here.