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

@Graham - it's also likely that those most likely to join a self-help group are those most in need of help - i.e. those at the relatively severe end of the spectrum, and less likely to improve.

It's the old 'correlation is not causation' thing again. Being in a self-help group doesn't cause you your health problem; more likely that your health problem has caused you to be in the self-help group.

 

Exactly this. Arguing that attendance at an ME self-help group is a cause of worse outcomes is the same as arguing that attendance at an Alcoholics Anonymous meeting is the cause of those people drinking more.

 

I think you're right about using that to our advantage.

Here's one study by Goudsmit, Jason, Nijs
It's behind a paywall but i seem to remember reading it at the time thinking it was a good one https://www.tandfonline.com/doi/abs/10.3109/09638288.2011.635746

Wonder what @Jonathan Edwards thinks?

ETA there is also this if the clinics want something to do.... https://www.pec-journal.com/article/S0738-3991(09)00229-8/fulltext

but in terms of evidence quality i have no idea as i havent read it I just remembered her having done it some yrs back

 

The other thing we need to emphasis is that the BPS crowd have had at least 30 years to prove their treatments work and have dismally failed. They have had more than ample resources, time, access to patients, funding, and the ear of policy makers, scientists and doctors etc.

 

I agree a couple of select examples would be useful rather than information overload

I was thinking of illustrating it like a patient journey (as per the free hospital notice board but from the patient perspective)

For me it started on the NHS website , which has the most misleading information on it this desperately needs to change
Then the questionnaire you receive before your appointment at the clinic
Then the diagnosis report and recommendations
Then the nhs leaflet and group session materials
Then the treatment at the clinic and accompanying booklet (and messaging on noticeboards)
Then if you are mild and can work, the return to work and reasonable adaptations letters

We could give examples of the best and worst cases of these steps from what we collect?

 

Exactly, but that is a statistical argument, and we can't expect the psychs who carry out extensive spreadsheet push-button testing to appreciate such ideas.

Mind you, the more severe cases are unlikely to be able to attend ME centres, and few offer home visits. If you are talking of local support groups as opposed to online groups, then again the most severe can't make the meetings, although there will be some who can make local meetings but not a lengthy trip and afternoon session at an ME centre.

It still doesn't change the fact that they have no logical reason to be sceptical of support groups.

 

Gabrielle Murphy who is the consultant Physician running the Royal Free service was also on our table....I think we definitely drew the short straw.
Though I have heard people saying that at least she is personally honest with er patients that they have no cure.

 

She was a co-author on PACE, and their recent response to Geraghty: http://journals.sagepub.com/doi/full/10.1177/1359105316688953 That included a defence of their 'recovery' claims. Anyone push her on that?

 

We had Dr Kelly Morris who I think said she works with GM and is involved with BACME?
I think GB Cliunic has been axed anyway?

Ist job is to extracate a delegates list from NICE and Rupert Thomas?
I have a list of my table which I will post soon.

I have also been going over recollections and notes now my head feels less like a tumble dryer!! ( PS I don't have ME but am a care for two who have it).
This thread is great for crystallising thoughts from the day.
Onward and upward.

 

If some were just interested patients, are there any issues with posting names?

 

Yes I would find this pretty concerning..

 

Yes @Suffolkres, I think there are some legal issues here, and rightly so. Even on my Bird Club Wiki site I am asked not to mention who else was present at a certain time and place. When people go to meetings they do not necessarily expect that to be put on the net. Certain people one can be reasonably confident will be happy to have their presence known but that may not apply to everyone, especially patients but possibly health care professionals too.

 

Point taken, It's just that we have been asked who was there (mainly which professionals).

 

I understand set in stone is not the best of phrases, what I mean is that surely the committee needs to be aware of, and take into account the whole body of research on the disease for it to be able to come to an informed decision on any treatments for ME/CFS.

After reviewing the evidence, the IOM report concluded that ME/CFS is a serious multi system disease, and that it is not a behavioural disorder. They clearly thought there was enough scientific evidence to come to this conclusion.

The remit of the 2007 guidelines was to look solely at the research on treatments and not at any biomedical evidence about the disease.

Now that may be absolutely fine for most diseases because research on treatments will have been based on the available science on the disease, but with ME/CFS, the only treatments, CBT/GET and LP, are not based on available evidence, on the contrary all the biomedical research is actively ignored by these researchers and anyone reading those papers will be oblivious of its existence.

So it seems to me it is essential ( hence my use of the phrase set in stone ) that the committee is fully aware at the start of the process of the scientific evidence and takes that into account when assessing the research on treatments for ME/CFS. Without that knowledge how can they do their job?

And how can they assess patients’ reports of harm from CBT/GET if they are unaware of all the scientific evidence, if their only knowledge of ME/CFS comes from the treatment papers where ME/CFS is viewed as a behavioural disorder what credence would these reports have?

If they reject the CBT/GET research, what might they then recommend as an interim solution for treatment?

Without knowledge of the scientific evidence they may well be led to conclude ME/CFS is a MUS and recommend patients are seen at MUS clinics for generalised CBT/activity management etc until such time as there are other treatment option, thus bolstering the whole notion of MUS and keeping ME/CFS in the hands of the psychiatrists.

 

I suspect they wouldn't now dare to have a psychiatrist or someone with obviously strong BPS connections in control or even in the committee, but that's not to say there won't be infectious disease doctors, immunologists, neurologists etc who support the BPS/MUS view of ME on the committee so that ME can be subsumed into MUS.

The history of ME over the decades is of this committee or that committee being stacked with BPS followers. I sincerely hope this will be different but we need to be aware of how things have worked in the past and hope history doesn’t repeat itself.

 

Yeh there was someone at the meeting (who was anti BPS) nevertheless arguing for ‘a balance’ of BPS & non-BPS on the committee as though that was the best we could do. I wanted to scream noooo but the facilitator moved us on

 

I quite agree NICE has to uphold their policy of requiring good evidence base for treatments, and as there is no good evidence base for any treatments that leaves us with no treatments, which NICE finds problematic.

If they did reject CBT/GET, insuring they adhere to the good evidence policy would be very important to ensure they don't try and fob us off with some generalised MUS CBT option in the interim.

 

Was that a patient, carer or another type of participant? (and not asking for names)

 

Yeh I am wary of making people identifiable so I’m not sure if I should say?

 

I realise that the IOM framed things in this way. However, the truth is that we have nothing that provides firm evidence for a pathological mechanism in ME. I wait to hear about convincing evidence for this mechanism or that but so far there is nothing tangible. There really isn't. And the chair of the NICE committee will know that and will not change his mind however many papers he reads, any more than I.

I think we need to recognise that the evidence is not there yet and work on that basis. Anything else is stretching things in just the way the BPS people stretch things. And their strongest card is to say that patients only object to their treatments because they insist that they have a 'biomedical' illness. We need to object on the grounds that their treatments do not work and are distressing and perhaps harmful. We have no scientific evidence of any such harm but we do have patient experience to suggest it.