Briefing paper for parliamentary debate.

[NelliePledge]

Would it not be easy to remedy this particular issue very simply by just omitting 'primarily' from briefing document, edition 2?
Depends on what the writer of this section meant to convey I suppose. I would be happier if the word primarily was omitted.

I agree that sentence needs revisiting -it is a hostage to fortune -at the minimum the word primarily should be deleted. @adambeyoncelowe @chicaguapa would you be able to raise the concerns people are highlighting about this sentence?

I've read through the document and it does a pretty good job of meeting the needs of the MP audience most of whom will have very limited or no knowledge of ME. This means each bit is of necessity very short as more detail would be information overload. I think its positive to have highlighted key actions.

 

[adambeyoncelowe]

I agree that sentence needs revisiting -it is a hostage to fortune -at the minimum the word primarily should be deleted. @adambeyoncelowe @chicaguapa would you be able to raise the concerns people are highlighting about this sentence?

I've read through the document and it does a pretty good job of meeting the needs of the MP audience most of whom will have very limited or no knowledge of ME. This means each bit is of necessity very short as more detail would be information overload. I think its positive to have highlighted key actions.

Yes, we're aware. It's one of those weasel words that sometimes creeps into things. I think whoever wrote that hadn't thought it through, and was trying to say something like 'we think it's biological although we have no absolute evidence of aetiology'. They were trying not to overcommit where there's not concrete evidence, but the result is that it now implies something they don't mean.

I also mentioned the wording around GET. My suspicion is that the clause 'or issue a warning' was added at the last minute, and that really that suggestion was supposed to cover issuing a warning on the current NICE guideline until GET can be removed completely in the next guideline. Again, the language was too vague here.

I think reading this back on short notice, some of these wording issues weren't apparent. There obviously were a lot of changes discussed to the sections I'd seen previously, but I wasn't a part of the editing process. Perhaps next time, the authors of each section should stay involved throughout, so they can discuss why they worded something in a specific way and what it would mean to change that wording.

Personally, I would try to keep documents like this in-house in future, and plan to give them more time, but ultimately that's not my decision. However, this briefing was very resource-intensive, compared to the documents #MEAction normally publishes, so maybe we're unlikely to see this kind of collaborative document again in future anyway.

 

[Stewart]

It doesn't seem that way to me at all.

Doesn't 'Cancer is partly a psychological disease' sound wrong to you?

I realise this wasn't addressed to me - but the phrase "Cancer is partly a psychological disease" doesn't sound wrong to me. There absolutely are psychological aspects to cancer, and helping patients deal with them is an important aspect of the palliative care that is offered to many cancer patients.

I can obviously understand why people would want the briefing to clearly state "ME/CFS is entirely a biological condition with no psychological causes" but at present it would be very easy for the BPS school to dispute that claim by simply pointing to research that appears to show something different. The argument that the briefing makes instead - namely that regardless of what the causes of ME/CFS actually are, the UK is increasingly out of step with informed international opinion - is far harder for the SMC to refute, mainly because it's clearly true. The day we have irrefutable proof that the causes of ME/CFS are entirely biological is the day we can clearly and definitively state there are no psychological factors that play a part in developing the condition. But until that day comes it doesn't make sense to try and win over politicians with 'facts' we can't actually prove.

 

[Sasha]

I realise this wasn't addressed to me - but the phrase "Cancer is partly a psychological disease" doesn't sound wrong to me. There absolutely are psychological aspects to cancer, and helping patients deal with them is an important aspect of the palliative care that is offered to many cancer patients.

I'm trying to make the distinction between psychological causes and psychological consequences. I think that what you and @Esther12 are talking about are psychological consequences but that when people read the offending sentence they'll assume that we're talking about a disease with psychological causes.

We can't afford to have that ambiguity in phrasing. It's clear that many people - me included - are reading that statement as being one about causes, and I think that's how the majority of outsiders are likely to read it, especially given the fact that they've been primed by the media etc. to see this as an entirely or mainly psychological illness.

 

[Sasha]

I can obviously understand why people would want the briefing to clearly state "ME/CFS is entirely a biological condition with no psychological causes"

Just removing the word 'primarily' would do the job for me.

but at present it would be very easy for the BPS school to dispute that claim by simply pointing to research that appears to show something different.

And I think it would be very easy to knock down that house of straw. They don't have any remotely sound research that points to anything of the kind, and the more they expose their bad science, the better. The best they can produce appears to be PACE, and they're starting to reap the consequences.

 

[Sasha]

The difficulty is that in saying that ME is 'primarily biological', #MEA is currently making a positive statement that ME is partly psychological in origin, and there's no evidence for that - and it's something that informed PWME won't support.

I don't want to see #MEA putting this view out and I don't want to see them losing support for what seems to me a language glitch. I don't think the writer noticed the ambiguous meaning, and given what @adambeyoncelowe said, it seems to have crept in via 'editing by committee', which is often a disaster.

 

[Stewart]

I'm trying to make the distinction between psychological causes and psychological consequences. I think that what you and @Esther12 are talking about are psychological consequences but that when people read the offending sentence they'll assume that we're talking about a disease with psychological causes.

We can't afford to have that ambiguity in phrasing. It's clear that many people - me included - are reading that statement as being one about causes, and I think that's how the majority of outsiders are likely to read it, especially given the fact that they've been primed by the media etc. to see this as an entirely or mainly psychological illness.

I understand that - but the point that I'm making is that the statement you used ('Cancer is partly a psychological disease') is not in itself a statement about causes. It's just a general statement about cancer. And I would say that anyone who reads that statement as being specifically about the causes of cancer is (respectfully) making an error of comprehension, because regardless of what you may have meant that's not what your statement actually said. Similarly, the issue that you've identified with the briefing is - in my opinion - less an ambiguity in phrasing by the authors and more a misreading on the part of some readers of what it actually is that the authors are arguing.

The difficulty is that in saying that ME is 'primarily biological', #MEA is currently making a positive statement that ME is partly psychological in origin, and there's no evidence for that - and it's something that informed PWME won't support.

I don't want to see #MEA putting this view out and I don't want to see them losing support for what seems to me a language glitch. I don't think the writer noticed the ambiguous meaning, and given what @adambeyoncelowe said, it seems to have crept in via 'editing by committee', which is often a disaster.

Except I don't personally think that's the statement that they're making, because if you read page 5 of the briefing in its entirety you can clearly see that they aren't trying to argue the case that ME/CFS is a biological condition rather than a psychological one. The argument they make instead in that section of the briefing is that regardless of the ins and outs of the ongoing debate over the nature of ME/CFS, there's a growing international consensus about how the condition should be treated and that the UK's stance is increasingly at odds with this view. That's the argument they're summarising in the sentence that you, and others, are unhappy about. Whether taken in context or out of context it seems quite clear (to me at least) that this statement is not making any claims about the origins/causes of ME, but is instead pointing to that 'growing international consensus' and the UK's divergence from that expert opinion.

I do understand people's concern - if you take that sentence out of context and then misread what it actually says, you can easily misinterpret it as claiming there's a role for psychological causes. And I agree that there are alternative phrasings that would have reduced that possibility. However I think it's completely clear from the existing wording of that whole page that this isn't what the document is arguing - so I don't share the concerns about this particular sentence, and consequently I don't feel it is in as urgent need of change as others clearly do.

 

[NelliePledge]

Q Is the wording including primarily capable of being misunderstood by a reader who has little or no knowledge of ME as telling them that ME is partly of psychological origin

A Yes

Q is that the understanding we want them to have?

A1 Yes - leave the wording as is
A2 No - get it changed.

I understand the need to keep things as straightforward as possible but if words give a strong chance of an alternative reading they need tightening up.

My concern is now this alternative reading has been flagged it needs addressing. It is a complete hostage to fortune.

ETA : this is where a reviewer who hasn’t been involved in the writing would come into play to check for glitches

 

[Binkie4]

@NelliePledge's above post is admirably clear. We are at the point where discussion about ME is about to go out into a wider world that has no knowledge of the historical background about disputes.

Do we want to cause confusion or give a clear picture? If we aren't conveying a clear message, I think we're shooting ourselves in the foot.

 

[Esther12]

I've only been going off the discussion here, so sorry if I'm missing some important context, but I think that this sentence is likely to be unhelpful, with or without 'primarily' removed.

“Recognize that ME is primarily biological, not psychological, in line with a growing international consensus”

Does anyone think that this is a useful topic to encourage MPs to debate, or to raise concerns about with people like Wessely?

Also, on the 'cause vs consequences' of ME and any possible psychological aspects: I think that the uncertainty about the causes of ME makes it much more difficult to maintain a clear distinction when a sentence just says "ME is...". I can see why some sort of hedging word like 'primarily' would be inserted to try to avoid seeming to go beyond the evidence and giving the impression that we really know what causes ME, and that there is no psychological aspect to it - although this attempted hedging doesn't really work here. When there has been such an attempt to dismiss critics of PACE as just being motivated by an ideological opposition to the possibility of there being any psychological aspects to the cause of patients' symptoms there is good reason to be careful with our phrasing here. I've never seen a good way of concisely addressing this topic that would be likely to benefit us, and very often it seems that raising this issue is unhelpful.

Just mentioning the findings of things like the IOM report might be useful, as an illustration of the growing international consensus, but I think it's best to be pretty cautious around the Psychological vs Biological debate.

 

[chrisb]

here's a catch in that #MEAction is part of Forward-ME now and so works with all those charities. IiME have said they do not want to work with AfME. I can't see how they can be included given that snag. But maybe this will be the impetus for them to extend an olive branch?

I suggest that caution is required before too readily attributing unprofessionalism to other charities. The words mote and beam spring to mind. Now that it is apparent that MEAction is also a member of Forward-ME you will readily appreciate that my criticisms, on another thread, of the unprofessional nature of aspects of the behaviour of that organisation apply equally to all its "members".

 

[Binkie4]

i agree with @Esther12 that the words " not psychological" also need to be removed from the offending sentence so that it reads

"Recognise that ME is biological in line with growing international consensus"


http://www.margaretwilliams.me/2018/highlights-of-prof-anthony-komaroff.pdf
Prof Komaroff ( with SCMI) provides a very useful overview of the state of international biological research.

Apologies for not reading every detail currently. Due to be separated from my umbilical cord aka wifi imminently.

ED: the word ' biological ' inserted 3 lines from the end. Komaroff' paper addresses some of @Esther12's concerns, I think. We have moved on biologically more than is recognised.

ED2: line 1- psychological replaced biological. An error.

 

[Sunshine3]

i agree with @Esther12 that the words " not psychological" also need to be removed from the offending sentence so that it reads

"Recognise that ME is biological in line with growing international consensus"


http://www.margaretwilliams.me/2018/highlights-of-prof-anthony-komaroff.pdf
Prof Komaroff ( with SCMI) provides a very useful overview of the state of international biological research.

Apologies for not reading every detail currently. Due to be separated from my umbilical cord aka wifi imminently.

ED: the word ' biological ' inserted 3 lines from the end. Komaroff' paper addresses some of @Esther12's concerns, I think. We have moved on biologically more than is recognised.

ED2: line 1- psychological replaced biological. An error.

Totally agree so can the document be edited??? Can anyone answer that or who can edit it. This is such a great opportunity for us, we need to get it right.

 

[Sunshine3]

I've only been going off the discussion here, so sorry if I'm missing some important context, but I think that this sentence is likely to be unhelpful, with or without 'primarily' removed.

“Recognize that ME is primarily biological, not psychological, in line with a growing international consensus”

Does anyone think that this is a useful topic to encourage MPs to debate, or to raise concerns about with people like Wessely?

Also, on the 'cause vs consequences' of ME and any possible psychological aspects: I think that the uncertainty about the causes of ME makes it much more difficult to maintain a clear distinction when a sentence just says "ME is...". I can see why some sort of hedging word like 'primarily' would be inserted to try to avoid seeming to go beyond the evidence and giving the impression that we really know what causes ME, and that there is no psychological aspect to it - although this attempted hedging doesn't really work here. When there has been such an attempt to dismiss critics of PACE as just being motivated by an ideological opposition to the possibility of there being any psychological aspects to the cause of patients' symptoms there is good reason to be careful with our phrasing here. I've never seen a good way of concisely addressing this topic that would be likely to benefit us, and very often it seems that raising this issue is unhelpful.

Just mentioning the findings of things like the IOM report might be useful, as an illustration of the growing international consensus, but I think it's best to be pretty cautious about this stuff.

Why would we be cautious about mentioning IOM??

 

[Jonathan Edwards]

"Recognise that ME is biological in line with growing international consensus"

I am afraid I agree with Esther12 that this sort of sentence walks right into the trap laid by the BPS people.

It suggests that patients' views are driven by a desire to see their disease as legitimate rather than by science. Which allows the BPS people to say - and the REAL science shows bla bla.

There is no solid science that shows ME is one thing or another. I find Dr Komaroff presentation unhelpful because to a scientist it looks like just window dressing of an empty shop.

The sentence comes under recommendations to NICE and NICE are not interested in making statements about whether a disease is this or that if we don't know. I am personally sure it would be better out.

 

[Esther12]

Why would we be cautious about mentioning IOM??

I meant it's best to be cautious on the whole 'psychological vs bioological' topic, and therefore that just making a reference to the IOM report can be a way of addressing the issue without needing to make any assertions of ones own. Edited my above post now to make clearer.

 

[Hoopoe]

I am afraid I agree with Esther12 that this sort of sentence walks right into the trap laid by the BPS people.

It suggests that patients' views are driven by a desire to see their disease as legitimate rather than by science. Which allows the BPS people to say - and the REAL science shows bla bla.

There is no solid science that shows ME is one thing or another.

I think the BPSers take this position to discourage debate over whether the illness is best understood as psychosocial problem or organic illness, because the facts are not in their favour, even if it is not understood what ME really is.

I would suggest that avoiding this debate means they were successful in manipulating the behaviour of a critic.

 

[Jonathan Edwards]

I think the BPSers take this position to discourage debate over whether the illness is best understood as psychosocial problem or organic illness, because the facts are not in their favour, even if it is not understood what ME really is.

I would suggest that avoiding this debate means they were successful in manipulating the behaviour of a critic.

I actually think it is the exact opposite. The BPS people love it when patients go on about their illness being physical - this is precisely evidence of the 'unhelpful illness beliefs' that started the whole thing off. If patients take the position that they have no beliefs or opinions about what causes the illness then the BPS theory evaporates on the spot. There is no point in using CBT to change beliefs that aren't there!

I see this from the other side - from within the medical establishment. Every time I see a statement about ME being physical I think 'Own goal chaps, own goal.....' The reaction from the establishment is knee jerk and predictable. What people with ME need Carol Monaghan to help with happening has nothing to do with anybody knowing ME is physical. It is to do with finding out what it is by doing research. If we knew what caused ME there would be no need to call for research.

 

[RuthT]

So is a broken leg partly psychological?

I have long thought that CBT should be given for behaviour and beliefs that lead to injury and so incur expensive medical costs. So ppl who ski or drive & take unnecessary risks should have CBT to adjust their thinking and ensure their health or that of others doesn’t suffer as consequence of unnecessary risk taking behaviour.

 

[Hoopoe]

I actually think it is the exact opposite. The BPS people love it when patients go on about their illness being physical - this is precisely evidence of the 'unhelpful illness beliefs' that started the whole thing off. If patients take the position that they have no beliefs or opinions about what causes the illness then the BPS theory evaporates on the spot. There is no point in using CBT to change beliefs that aren't there!

Brief statements like "but it's physical" yes.

Due to the effort it takes to think, formulate thoughts and type this is often the only thing patients say, but they could write much about the reasons they settled on this position.

I was "treated" with illness denial early on and it was a disaster. What I and others believed about the illness didn't matter. Manipulating beliefs and nudging the patient towards certain behaviours did not improve symptoms, it merely strained relationships and probably contributed to relapses because it made me persist longer in the actually unhelpful behaviour of trying to force myself to function despite symptoms.

Due to fluctuating severity, I repeatedly ended up in the situation of feeling well enough to try and make the first steps for rebuilding my life. I was enthusiastic and motivated to do it, and did not let fear hold me back. Again, none of these psychological factors really mattered.

The BPSers claim that deconditioning is the cause of many symptoms, and that patients should push themselves more. Yet my experience is exactly the opposite: resting and being easy on myself and asking for support decreases symptoms and helps me get through periods of increased illness severity.

I went to therapy twice and was very willing to try anything and didn't exclude the possibility of some hidden emotional trauma. "Experts" told me this was a thing and I initially saw no reason to disbelieve them. It just didn't work. I've actually tried a lot of embarassing quackery over the years. If I appear close minded, it is due to experience, not prejudice.

I could go on, but it's exhausting. The illness model they propose makes absolutely no sense for patients and that's why we say that it's physical. I don't think they love these kinds of detailed explanations.

PS: I got a bit lost here, the context was actually whether the science points in one way or another. I think it does, but again it needs detailed examination of the evidence and that is even more exhausting. Do pediatricians really think that for example the CPET literature is more consistent with false illness beliefs than some as of yet unexplained organic condition?