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

Tending to show is not enough, though. There are tens of thousands of papers tending to show this or that in any number of diseases and the great majority of them never turn out to mean anything useful. Peter Barry works in intensive care paediatrics. He will be used to sifting out the studies that show from those that tend to show, because it matters to responsible care.

I think it is a pity that PWME have been encouraged to think that firm evidence of pathology has been found. It may be good to be optimistic but not to be unrealistic. Pointing Peter Barry and his committee to a vast list of papers that in the end come to no very definite conclusion is not going to help and I think distracts from the real arguments.

 

@Jonathan Edwards - in Dr Komaroff's webinar this week, he referred to an old study of his showing big differences on three tests between PWME and healthy controls but in response to a question about why these weren't being used as biomarkers, he said (in essence) that they weren't sensitive/specific enough for that use.

But do the big (and they were big) statistical differences between PWME and healthies in this and other studies indicate disease, or have this and similar studies failed to replicate (or to have replication tested)?

 

If they want a psychiatrist on the committee, can anyone think of a decent UK psychiatrist for this? Maybe trying to encourage a good choice would be the best way of avoiding a bad choice?

 

Perhaps the obvious choice is Stuart Watson who works with Julia Newton.

 

I think that is moot in practice. For an infectious disease like Lyme or hepatitis an appreciation of infectious cause is going to have a big impact on what is included as sensible advice.

 

I am not sure what big differences are being referred to. I have not seen anything that has stood up to replication well and am not actually aware of anything major from Komaroff. Is there a link to this?

 

A recording of the presentation is not yet available on YouTube. Going from memory, he found statistically significant differences in IgG, something related to lymphocytes (lymphocyte counts maybe?), and something else (also related to immune function).

 

IIRC it was a fairly large (hundreds of patients?) study that he'd been involved with quite a few years ago. He had a slide in his talk summarising the findings, and one of the odds ratios was over 20, I think, but I can't remember more than that. Looks like we'll have to wait for the webinar going uup on YouTube.

 

This one maybe? 203 cases and 203 controls.

Paywalled at https://www.tandfonline.com/doi/abs/10.1080/21641846.2015.1023652?journalCode=rftg20

 

I don't think so, Andy - I don't see any biological measures in there. Komaroff was comparing levels of three particular biological things.

 

Or, indeed, that seeing a psychiatrist is the cause of mental health problems (which may well be true in some cases).

I have mixed feeling about this. Do you think we should distinguish between treatments which have been trialled and shown to be ineffective (eg CBT, GET and Rituximab), and treatments which have not yet been adequately tested for which there is anecdotal evidence of benefit and very little risk of harm (eg B12, Q10)? Is that what Charles is suggesting?

I know you’re not, but I think it is important not to differentiate between biomedical and psychiatric illnesses. The question of whether ME is perpetuated by pathology (biomedical) is completely separate from the argument about whether or not it is psychiatric. My understanding/belief is that all genuine psychiatric illnesses are biomedical. When biomarkers are discovered for psychiatric illnesses, it may change their names and the way they are treated, but it won’t necessarily change how they are classified. The classification is a reflection symptoms more than aetiology.

Of course, Wessely et al do not suggest that “CFS/ME” is psychiatric or biomedical. Quite what they believe becomes harder to understand the more you listen to them, and does not always appear to be consistent. But I think I’m right in saying that they believe there is no underlying pathology which prevents recovery, that the illness is perpetuated my patients’ unhelpful beliefs and deconditioning, and that it can be reversed through psychological and behavioural interventions (despite evidence to the contrary).

Ironically, the difficulty in discrediting the BPS creed seems to be partly due to its unfalsifiability – which ought to have prevented it from being taken seriously in the first place.

 

No, I think not. B12 has been used for decades as the panacea placebo and I would bet my shirt that is all it is. It is the perfect placebo - being a vitamin sounds healthy and natural and being an injection makes it powerful. Q10 is pretty similar. I can think of no plausible scientific reason why these should make a difference to ME.

I think there are two further specific arguments for not suggesting things like this. Firstly, any physician can use options like this if they want anyway. There is no need to tempt patients into thinking they help by mentioning them specifically. The second is that it is all too easy to give the impression a real treatment is being given which may raise false hopes and delay attention to important problems. If anyone genuinely thinks B12 or Q10 help ME there should be a decent double blind trial. Then if they do something we actually have some facts. The reason nobody does such a trial is that they know in their heart of hearts that it will not show much.

I keep banging on about this but we need to impress Peter Barry that the patient community know their stuff and are not going in for wishy washy argument. It is interesting that he quipped that they had forgotten to separate Charles and I. Presumably he has not yet worked out that Charles and I have quite big differences in approach.

 

The only reason I was uncertain was that I hadn’t appreciated your first point – that physicians can prescribe these things anyway. Given that, I think you’re absolutely right.

 

It sounds like Charles isn't on the right page.
Has he joined here yet or I wonder how we could engage with him to see things clearer.

 

Sorry if people have already said this, but what is the next step in this process?

 

There is a difference between putting something in the guideline as a positive suggestion and what physicians are free to use if they wish. I don't think mestinon should be suggested specifically but if a physician feels they are justified in using it they can now and will still be able to. There might be an issue about costing but if it a cost issue I think we have to fall in line with the general NHS rule that funding of drugs is tied to reliable proof of efficacy. Without that one gets chaos with the budget as constrained as it is. And unless rules like that are in force nobody is ever motivated to do proper trials.

 

I think we wait to hear what the final scoping agenda is. We also wait for adverts asking for applications for committee places.