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

I would be interested to know what the evidence base for therapist-delivered treatments for MUS is - if there is any. My impression has been that PACE and the GET meta-analysis for ME have been taken as the bedrock evidence from which to extrapolate. If we can get to the point where it is agreed by NICE that this evidence is not there then the MUS programme will be out in the cold in terms of its own guidelines. There are other political forces at work in the NHS, like IAPT, but much of the programme is driven by academic doctors wanting to build psychosomatic empires through pseudo research. If it becomes clear how pseudo this is for ME maybe it will dent the bigger program.

 

Psychological therapy for medically unexplained symptoms

https://eprints.soton.ac.uk/415890/

Cognitive Behavior Therapy for Medically Unexplained Symptoms: A Systematic Review and Meta-analysis of Published Controlled Trials

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5559983/

 

@Jonathan Edwards

If anyone saw the BBC programme this week "the doctor who gave up drugs" there is a fascinating interview he had with I believe a NICE representative after he points out that the scientific literature for anti depressant and I think also ADHD drugs clearly shows almost zero efficacy and even the Cochrone report makes a statement stating the same.

The Woman being interviewed looked sheepish even admitting it to be the case, and didn't seem to care about the enormous published list of potential horrific side effects yet played the, "well we had to use clinical reports as the scientific literature was lacking in evidence and if it helps some people we have to have something to offer".

What can one say to that?!!

From 47 mins is where these issues come up. Unfortunately the doctor in this show then goes on to commit the identical mistake by touting mindfulness etc as a cure all using some weak obviously flawed reporter bias interviews on children and it appeared to me guiding them to give the answers back to him that they believed would please him.

It was fascinating however to see the NICE guideline committee women and be given a insight into how NICE just doesn't understand the issue of what evidence based is supposed to mean and that they pretty much admit they don't care anyway because, "they have to offer something".

https://www.bbc.co.uk/iplayer/episode/b0b4jjq3/the-doctor-who-gave-up-drugs-series-2-episode-1#

 

I saw this and thought exactly the same thing regarding NICE. I think the mindfulness was reported in a misleading way since the child clearly was just managing rather than being improved per se. The point that the drugs weren’t worth the side effects fell flat though since most parents kept them on the drugs and added mindfulness on top.

 

Yes, I think I found that second study before - basically you cannot say anything because the studies are rubbish - and it even pretty much says that. If we can convince the right people that the ME studies are uninterpretable I think doing the same for MUS will be like shooting fish in a barrel.

It may all boil down to the same old 'but we have to offer something'.

 

Why not offer checking for common comorbidities such as POTS, OI, food intollerances, and all the thing slisted in here?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5474682/

I know you don't like supplementing with magnesium, B12, vitamin D if there's no good evidence but these are surely going to do less harm than GET and patients will accept that. If something has to be offered, at least make it cheap & safe.

 

Why not just train specialist consultants in the latest biomedical research and patients can see them, with further referrals for orthostatic intolerance signs and symptoms and symptom management. They also could write supporting medical evidence for sickness and disability benefit claims, as consultant reports are viewed as the best evidence.

 

But that's my whole point, it was BBC "entertainment science". What you saw was an hour of edited tv not published repeated science. The fact that they didn't control a single variable is my point and there was zero long term follow up and only showed us the "efficacy" during mindfulness sessions with the cameras on the kids with a team of people desiring a specific outcome from the kids who may have just held it together for those moments.

We don't know how the children were selected, which definition they used, who was excluded, the effects of deemed failure by a patient if the mindfulness doesn't work for them and the consequences they may face because of perceived failure to improve and the effect on rediagnosis being forced on them etc etc.

To me it was just Estherism.

 

You are bang on about the drugs but I really think mindfulness as it is being used is just CBT etc and potentially has the same disastrous social, medical, abuse and neglect as CBT and GET does for us and children with ME.

It may however be the pacing of adhd etc but its so generic and is being rolled out everywhere it seems in all social sectors, I find it worrying.

 

She is a paediatric physio.
She also said that they had just finished the Magenta trial and the results looked good!!

 

I think the point the doctor was trying to make in the program was that we prescribe a lot of drugs unnecessarily, which incidentally I agree with He inferred that the mindfulness could replace the drugs and with the editing tried to portray it as a substitute which it isn’t. It is only a management technique. He also showed a wide range of children’s ages and severity levels so it wasn’t at all representative or scientific. The edit was a bit misleading from the original premise of the program and it didn’t quite wrap it up properly with any follow up which is a common deception with these mind based techniques.

Perhaps mindfulness does have a place ...I don’t know ...and I was no wiser having watched a very cobbled together and unscientific review of its effectiveness. I suspect that it depends upon the child and how severe he/she is and to a lesser degree how old/mature they are?

 

Magenta is the trial with actimeters (although Crawley says that she thinks kids cheat with them, so who knows what that means).

 

I also attended the meeting (you might have spotted me as the 6ft tall woman with a scarf on her head! Lol).
I was in the group that moved out of the room and Peter Barry spent the whole discussion with us. Let’s just say that he definitely did his homework and he is pushing for patient/carer input big time. He genuinely wants to get the severely affected group heard.
We probably spent a fair bit of time making sure that we got through to him.

 

Will they be featured in the results? She did say at one of her talks that children don't like them because it makes them different. Cannot recall which bit of "research" that applied to.

I think she is under the EC spell unfortunately.

 

Welcome to the forum @Alena Lerari