NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

I have been trying but it can be an uphill struggle. Charles Shepherd would like to see more flexibility in treatment options. But to my mind that is a Trojan Horse.

 

A clinic which offered advice on what patients consider pacing ie energy/activity management. How to do what your body will allow with limited energy and the lowest energy way to do it. This could be with support from an OT, with ideas of using disability aids. Referrals to Social Services for social care to help in the home.
Further referrals for dysautonomia testing or do the tests there. (Reference Prof Newton's report to NICE)

 

No to any form of CBT. The reason I say this, is people assume we get supportive therapy for the newly diagnosed to come to terms with living with a highly disabling illness. The type we really get is brainwashing patients into believing what they have is not pathological but their thoughts and behaviour keeping them ill.

Any support doesn't have to be prescriptive. Just offer medical care in a supportive setting. It's not difficult and doesn't cost anything to listen to patients and be directed by them....you know, patient centred care! *Sarcasm* People with ME have been doing this online and in support groups for decades.

 

After brainwashing sessions at one of the NHS CFS/ME clinics years ago, I eventually got referred to the consultant because according to the manager, I 'questioned the diagnosis'. I explained that I didn't, I just strongly disagreed with their explanation of the illness and didn't identify with the patient described in the manual. Anyway, the NHS consultant understood ME, gave a biological explanation for it which is now being more fully explored in research and disagreed with the clinic's approach which he wasn't aware of. He had a few strong words to say about Wessely too and said he was trying for a knighthood, which as we know, he got.

 

Where are the whistleblowers when you need them? Perhaps NICE should hear from them. Ex-staff of the clinics maybe.

 

I think that significant psychological harm could be avoided merely by having doctors confirm that this isn't something patients can control, and not psychogenic. In doing so they protect the patient from frustrated family members, employers, teachers, and probably also are in better position to protect the patient from quacks.

 

The thing is though, the clinic's literature and what they tell patients (and perhaps this consultant) before attending, was very different to what is delivered. He thought they did activity management/pacing, not graded aerobic exercise and psychobabble. The clinics also change their approach every few years, as well as staff, so understandable.

 

Yes it’s really tricky ....I can’t believe that attitudes will change in the Bristol bath area very quickly though ...more like lip service and carry on doing what they are doing. To be honest if they ditch GET that’s the biggest win. I worry about the “interpretation” of CBT and how that will be used to infer psychological for the insurance companies etc. So I really would want to see that removed as a treatment completely from the guidelines. If OH become the only place to go then we do run the risk of being put in a MUS clinic regardless so any clinic needs a specialist doctor but where are these doctors?

 

Removing GET is not enough and does nothing to address how and why we've been viewed and treated like this. The underpinning theory is what is at fault. There needs to be a complete paradigm change in how ME is viewed as well as treated. If NICE just drop GET, the clinics will just remove GET but still have goal setting and encourage extra activity on top of activities of daily living. They will still say patients are anxious about symptoms which causes hyperventilation, which causes dizziness (not dysautonomia), patients then fear and avoid activity, which makes them deconditioned and all the other BPS explanations.

 

I think it would be ideal to close most of the current services and start afresh. This would help get rid of a lot of those who've caused the most trouble for patients, be a clear signal that there real problems that are being recognised and that the way others within the NHS (and UK medical research) view CFS needs to change to, and put to bed the PACE scandal in a way that little else could... but there are potential problems.

Closing crappy CFS clinics could lead to them being replaced with even worse MUS clinics? (Would this even be worse? Maybe the MUS-style clinics are going to be self-defeating for the MUS 'experts'?). Sadly we're living in a society where health problems can be taken less seriously without the involvement of 'specialists' affirming that problems are worthy of their time - this can make rubbish specialist care better for patients than none. Also there are also some patients who want to try treatments with no evidence base for efficacy, and want to have specialist centres to provide them (this also makes it hard to argue against the provision of CBT/GET).

I don't really know what this adds up to. My suspicion would be that at the moment it would be worth pushing against the entrenched interests who want to keep CFS centres open, as that might at least help pressure them to make real changes.

Maybe a possible good outcome would be to have NICE guidelines that are a bit wishy-washy, but include within them acknowledgements of the problems caused by misleading claims about the evidence showing the efficacy of speculative interventions like GET?

 

I wonder what sort of training can be given to doctors wishing to specialise I suspect that there will be a shortage from the outset? I also wonder about care for those too sick to travel to a clinic. I don’t think the existing clinics are servicing their needs since the focus is on getting people better and back to work.

 

I don’t know the answer just posing a question ...not good debatingbstyle I know

 

With clinics I think it’s a real difficult thing to judge. Dammed if you do damned if you don’t. I think the thing really is to ditch all psychological treatments from the guidelines altogether.

I suspect the result will be MUS clinics regardless of what we suggest since I think closing/transforming the CFS clinics to MUS is a done deal. I’m planning on using my numb hands and painful wrist joints as my sick note to avoid the pottery classes.

At the end of the day, I don’t think we will get much help from GP’s or clinics until we have more research ...the only benefit is pacing advice and this can be given as a leaflet/ or national helpline. The thing I really benefited from by attending a CFS clinic was an official diagnosis and my OH helping me with letters advising my employer on return to work and reasonable adaptations. The gp could diagnose and write these though.

Wishy washy guidelines though don’t help us with insurance claims etc. So these need to be watertight to help people claim benefits/make their insurance pay out?

 

I’m just wondering what our justification is for the expense when there isn’t really any treatment other than monitoring (trying to think like them).

It might be worth working out a list of useful care/help to construct a role? A lot of people have mentioned orthostatic intolerance ...but I know that experts in this field seem to be a little rare as well (that might just be my impression). Perhaps there already is a list? @Jonathan Edwards what is your view on this? I’m struggling to see whether A this is a new role or B this could be tagged on to existing services say for other conditions?

I just totted up the current number of clinics and we have around 90 specialist Centers in the UK. I guess a large proportion of these have psychiatrists in them so would need to be replaced by say 50 specialist doctors if they have to travel to see patients then I guess there will need to be more. I have no idea as to whether this is a big or small ask in the NHS?