Briefing paper for parliamentary debate.

The problem with this for patients is that to us this isn't a matter to be debated, researched and only then proven, once the evidence supports it. That's been part of the issue with this the total discounting of the patient experience until the tests show something. To us, just as if you were shot or contractEd HIV or influenza or meningitis, it's not a question of a doctor saying ah I found your bullet or virus, I can now inform you you have a physical not mental disorder. We know we are physically sick, many of us have a classic pattern of not recovering from a virus, our symptoms from severe pain to sweats, spasms, headaches, flu feelings etc are not conducive with a mental health diagnosis or with ideas of deconditioning/dysregulation. When I went to my Drs , not with fatigue but with failure to recover and enduring "sickness behaviour" I didn't go saying what can this be am I mad or depressed , I went to find out why I was staying physically ill, and as a community we have to have right to assert that without that assertion in itself being seen as unfounded without proof etc or a sign that we are prone to unhelpful beliefs. That doesn't mean, as Jen breas films shown, that we aren't vulnerable to after time being worn down by the disbelief and start to question Ourselves once it's asserted that our symptoms can't have organic cause and must be psychosomatic as many of us have been told.

I don't have to stay neutral about causation And I'm not going to. Merryn croft case is great illustration of this - lively young girl, wonderful family, extreme pain and debilitation with absolutely no psychological explanation, clearly physically unwell despite in her lifetime not being able to have the scan or blood test to prove it. And even then, are we really without evidence, with the CPET tests etc, such as with the young fitness expert chap Jamie on the documentary by Ryan prior, who simply had this abnormal response to exercise not caused by deconditioning , I don't see why we are supposedly in a state of just knowing nothing, w.ith no proof of physical illness. IOM didn't think this. I find this position confusing.
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I fully accept ME being an illness where course and progression and outcome can Be acutely linked to management, PS factors can be important, the trouble with accepting a bps model in any way , Is the biological is so sidelined and some people have zero PS causation or perpetuation but are treated as iF they don't have a genuine, illness Unaffected and undetermined by their own beliefs , actions and lifestyles . Isn't it time we made it very clear this is a serious systemic disease "primarily" with the PS relegated to clearly only secondary and clearly not inherent status.

 

Also, just recently, a court in the US decided that Brian Vastag was objectively severely impaired by CFS. We may not know why it's happening but that doesn't mean we know nothing and cannot prove anything.

 

Actually I think that the BPSers were uneasy in their seats when the patient gave her speech to Scottish politicians. Was the patient walking into a trap or breaking free?

 

From what I saw, Emma was playing her cards exactly right because she had Chris Ponting alongside her saying that we don't know anything about the cause of ME and need to do research to find out.

 

The evidence for causation is not there and it's not helpful to say anything that implies anything other than that the causation is unknown. I believe it makes us look not serious if we do. Consequently I'm not happy with the phrase from the paper that's under discussion so I'm with those making that argument and I hope the wording can be changed to reflect that.

This briefing paper is from those purporting to be be our official representatives and expert opinion and the standard needs to be high. It's potentially going to be a matter of lasting record.

Currently we just have what might be clues to the aetiology . That's a a farce and a disgrace decades in so it's about time ME got decent research funding. In fact more than parity with other diseases of comparable burden would be fair imo but I recognise that's unrealistic. It's shamefully overdue.

It's an important part of the arguments to make the powers that be fund biomedical research. It would be a great shame if it were fumbled.

( foggy -apologies if garbled. )

eta - I'm not neutral about causation my argument is about making the arguments

edit grammar, spelling (and again)

 

I'm not sure they need us to believe or disbelieve anything to claim there's nothing wrong with us that can't be cured by exercise and CBT.

They believe it or at least use that model, that's the point. Behaviour changing therapy would still be used they would just claim it was teaching us what the problem was.

 

I don't disagree with the underlined bit that and think it's a good message. I also agree that patients tend to overstate the evidence and would often be well advised to be more cautious. But I worry that by avoiding the question of which direction the evidence is pointing, and what illness model makes sense to patients we are weakening our position. We are not in a position of knowing nothing. We don't have certainties but we do have clues.

Emma did say something about how the advice from a CBT/GET clinic put her in a wheelchair. Then she went on to talk about objective evidence of abnormalities in ME, mentioned PEM in the CPET literature and IOM report, asked for removal of CBT/GET as treatments. I doubt the BPSers saw that as victory!

Had she not said these things, it would have weakened her message and there would have been the risk that politicians fail to understand what was really going on.

 

I agree, but Emma gets everything absolutely right in terms of emphasis. I actually think her presentation (which I have re-watched) is the best piece of advocacy I have seen in the five years I have been involved in this. She does not over-egg anything. She mentions objective findings which is right because there are objective findings. The list of systems involved may be a bit overenthusiastic but since she is speaking as an individual patient who cannot be expected to know the science as well as Chris, this is fine. Chris then gives the expert scientist's perspective. Her account of getting worse while having treatment cannot be denied and illustrates the reality in a way that should make even the dyed in the wool ME service clinician think twice. Nobody was listening. And Emma is so eloquent that they bloody well should having been listening.

And nowhere does she say 'we want this recognised as physical'. The account of the realities is much clearer and to the point than that. We know what she is getting at. Nobody can twist it the wrong way. There is nothing here the BPS people can clutch on to. We have a very lucid young woman pointing out that their management was a disaster for her and nobody was interested. So she has broken free from the circular argument about what category the disease goes under.

 

My intention was not to defend such statements, but to caution against self censorship and downplaying of what we know about ME. In my view it is clear Emma condemned the BPS treatment and illness model and asked for objective biological aspects of the illness to be acknowledged (without saying anything like this 'we want this recognised as physical').

I am very tired now and need to stop.

 

@strategist take it easy, all you write is very interesting and well put. Don't wear yourself out. Hopefully, the balance will work in our favour on 21st but I am nervous about it.

 

Thanks.

No more complex analytical activity for me today.

I am nervous too, and I'm sure the PACE authors are as well. Even Wessely is active on Twitter.

 

@Emsho

 

I've just read the briefing, and I thought it was pretty mixed. There was some good stuff in there, but I thought it was a mistake to try to cover so much, and that it would have been much better to just focus on the PACE trial (along with other similarly flawed research).

"There is currently no pharmacological cure" - is there any non-pharmacological cure? If not, why is 'pharmacological' in there?

How many times does the document refer to 'inappropriate' or 'inadequate' care/education/treatment without providing specific examples? It sounds like Action for ME style evasion and makes for a bit of a boring read. I'm sure Wessely would be happy to endorse concerns about 'inappropriate' or 'inadequate' care.

Wouldn't Wessely be happy to endorse all these recommendations?

I think it should have been stronger [and more detailed] in the criticism made of the research underlying the promotion of GET as an effective treatment.

There's a difficulty with pushing for MPs to try to influence NICE, but I liked the last two of these recommendations. I really thought that more details on the problems with claims about the positive effect of GET were needed to justify them though. Also I thought that more information on why it was many patients have been left feeling manipulated, and that the could not provide informed consent would have been useful. Maybe these recommendations should have come after the discussion of PACE spin?

Not sure I see the benefit of citing Parslow et al. 2017 from Esther Crawley.

The PACE trial section is so short that it's a bit pointless. I know that it linked to the PACE document, but imo it would have been much better to focus on PACE and cut the other potential distractions. I can see the reasons for keeping it short for MPs, but it's usually the details that matter, and without them it easily descends to waffle.

IMO we should be doing all we can to keep the focus on PACE and avoiding muddying the water with other stuff. We saw how at the last debates MPs seemed happy to interject with irrelevant waffle - best to avoid encouraging that. There's no way a document this short could provide a "comprehensive" resource, and it's a mistake to try.

edit: Link to the briefing - http://www.meaction.net/wp-content/uploads/2015/05/ME_Briefing_21_June_2018.pdf

edit 2: I did think that there were a lot of good things about the section on the low level of funding, and that is a fairly distinct topic from PACE. Maybe that shows it's good to have more than just a focus on PACE? Although, it could be tied to it by arguing that the exaggerated claims about CBT/GET leading to recovery leads to a false sense of our current level of understanding of the condition?

edit 3: Also, while I've focussed on criticisms above, I didn't think that this document was anything like a disaster, in the way that I think a lot of documents are. It wasn't full of bizarre claims that go well beyond the evidence, and what it was trying to do was very difficult. IMO: it was a mistake to try to cover so much in such a short document as this inevitably meant that very little could be explained to the point where MPs could feel they had any real understanding of the controversy.

 

I agree with this. One must be clear in the wording.

I'd say AIDS advocacy e.g. wouldn't have come anywhere if they had said "Aids is primarily biological" including the (possibly interpreted) admission it's in part psychological ("homosexual personality disorder" at that time - just an invention by me). (This is just an example, it's not a fact as we know.)

Interesting enough I can't remember there was a discussion about psychological vs. biological in case of Aids, or was there? And I'd say, at the beginning of HIV and AIDS people really had huge emotional challenges, to put it euphemistically.

We know how most people understand the phrase "the disease XY is physical with psychological components" - it is understood in such a way that there's at least in part a psychological "cause" (like a certain personality type, trauma etc.). This is very dangerous and not backed up by any scientific findings. This leads to recommendations like meditation, or things like Lightning Process, or whatever, as a cure for cancer (these things exist), MS, ME, you name it.

I like to recall what Buddha said about diseases (I am not a Buddhist, it was just interesting). He said there are 9 or 10 possible causes for a disease (can't remember the detail but could search for it), and one if it could be kharma. Consequently, his opinion seems to have been that most diseases are simply biological, and a part of life. My impression was he didn't focus too much on kharma, or at least at some point in his life he didn't.

 

I agree. Really impressed by Emma. I'm always in awe when ME patients can be that outspoken.

I also agree that it's important that we as a community start moving away from the physical vs. psychological debate entirely. It never has, and never will help us.

Fight where we are strongest and where we will always win the debate. No need to pass ammo and guns around.

 

Well yes. We need a treatment.

 

Can I take from this that MEActionUK decided themselves that Carol Monaghan needed a briefing, that it was not requested by her and that MEActionUK chose the other charities to help produce it?

How did MEActionUK "identify the need for the briefing"?

When did they decide to use other charities to help produce it?

As i understand it Carol Monaghan was brought in originally by some of her constituents who have ME some years ago (pre-MEActionUK) and she has been aware of this for a number of years.

She's already spoken on the PACE trial and the MEA seems to have helped her with this. There doesn't appear to have been any MEActionUK involvement up to this point. It was one of her constituents who went to her about the PACE trial and started the ball rolling.

For all I know though the constituents who spoke to Carol about PACE and ME which led to her work may now be MEactionUK members or have asked MEActionUK to help out in this way.

I'm not being critical of MEActionUK or the document just trying to understand the events that led to this.

 

Not quite. Many advocacy groups produce Parliamentary briefings. But in ME circles, we're very tied up in trying to fund biomedical research, so we often overlook things like this. At the Parliamentary screening of Unrest, the subject was brought up, so the four charities present at the screening decided to work together to do it. It was designed to be sent to any and all MPs who might attend, not Carol specifically.

That's why it's an overview rather than a more detailed briefing. It didn't focus primarily on PACE, I assume, because Carol raised that issue pretty well on her own. Also, I think PACE can be a red herring. NICE produced its guidelines before PACE was published, and currently claims removing PACE makes no difference to the recommendations at present.

A big focus is on advocating for greater government spending across the board (research, treatment, education), rather than focussing on one issue, which other organisations have done very well already.

I'm guessing it was a lightbulb moment at the Parliamentary screening. I'm not sure if a politician had suggested it or a volunteer.

Either when the initial discussions began or shortly afterwards. The budget for the Time for Unrest advocacy stuff had already run out by this point, so there was no dedicated person who could do it all single-handedly. I don't think anyone would have set out to do the entire thing on their own.

I don't know. But lots of MPs attended the screening, so that may have been the final impetus to get things moving. Similarly, Emma's testimony in Holyrood was under the aegis of #MEAction Scotland.

My suspicion is that lots of people who were doing grassroots work individually have joined #MEAction to pool resources and work together. There are lots of people from here and other online places that are involved in various projects. I can't say if CM's constituent is the same person in #MEAction who's in contact with her, or if they were at the Parliamentary screening, because I don't know who that person may have been.

On a side note: everything here has been read and discussed. Comments aren't being ignored. I think it's a matter of figuring out whether we can revise the briefing, or if some other option is more feasible (such as a supplementary document).

 

I think revising the briefing is more appropriate.