ME/CFS meeting at the Royal Society of Medicine - March 18th 2015

[eafw]

.

Want to add: thanks to you and Charles for all the work you put into this and other advocacy, and if you can also pass on many thanks to the Countess as well.

Not to speak for everyone, but I'm sure a lot of us here suffering with this illness really appreciate that there are some who will step up for us when we are not in a position to do it ourselves.

 

[worldbackwards]

It was suggested that clinicians could not be left without anything they could say was known to work but the weakness of that argument was not explored further.

I wonder if that guy ever bet on the wrong horse, them tried to pay the gas bill with his betting slip.

 

[rosamary]

I just 'lifted' lines from prof Edward's post :

'making sure that the plan suits the individual patient, taking them seriously and being supportive without pretending '

(Do not be offended prof Edwards )

But it amused me because I get the impression that the 'without pretending' bit should be 'without pretending that the patient has somatoform illness'

I've dealt with too many medics now which has made me very cynical when, since the guidelines came out, the medics, put on their straight faces and do their utmost to make sure the patient can see that they are being taken seriously. (But, of course, psychosomatic illness is 'real' and must be taken seriously.

I think I'll drift off now...

 

[worldbackwards]

Margaret Mar, Countess of Mar. Presentation to the Royal Society of Medicine.
"The Politics of ME/CFS"
18th March 2015.

 

[Sasha]

That kid in the front is a bit scary!

 

[charles shepherd]

Want to add: thanks to you and Charles for all the work you put into this and other advocacy, and if you can also pass on many thanks to the Countess as well.

Not to speak for everyone, but I'm sure a lot of us here suffering with this illness really appreciate that there are some who will step up for us when we are not in a position to do it ourselves.

Thanks

This was a lively and amicable meeting and although some speakers were perfectly happy with the NICE guideline, and the validity of the PACE trial results, I think there was a unanimous acknowledgement that we do not have a really effective form of treatment for ME/CFS

In fact, there was probably more agreement than disagreement about the problems facing both doctors and patients in relation to nomenclature, definition, research, diagnosis and management

What I think was probably the main achievement is the fact that these issues have been discussed and debated in a constructive manner at a medical meeting at the Royal Society of Medicine

And I hope that we can now see more ME/CFS medical meetings and conferences where (for some of the time at least) all sides of the debate actually sit down and listen and talk with each other - which is something I have always beieved in doing!

I would add that I thought Fiona Godlee, editor in chief at the British Medical Journal (http://www.bmj.com/about-bmj/editorial-staff/fiona-godlee) did a very good job of chairing the meeting - even though the BMJ also came in for some criticism!

I will pass on your thanks to Margaret Mar as well when I see her next week. We are meeting Dan Poulter, DoH Minister, at the House of Lords on Tuesday to discuss various ME/CFS issues.

 

[Esther12]

Thanks for the summary @Jonathan Edwards , and the speech @Bob (not read it yet though).

There was quite a lot of agreement that the reality of patient care was more useful as a guide than any formal CBT trials (or GET protocols)

Hmmm... that actually sounds pretty bad to me. The 'reality of patient care'? Decided by who? Despite it's flaws, PACE does provide some information that patients can use to make decisions about what they want to spend their time on. It's results need to be fully presented, with information about potential problems with bias and in the context of what we know about placebo responses... but it's still better than just leaving things to the 'clinical judgement' of those who've built careers on claiming to have expertise of value to CFS patients.

I find that worrying, especially in the context of this sort of attitude:

It was suggested that clinicians could not be left without anything they could say was known to work but the weakness of that argument was not explored further.

the shakiness of which in meta-analysis was explained by Luis Nacul.

It would be really good to hear more about this. I doubt recordings were made (why let patients see what's happening? It would risk limiting what people felt comfortable saying) but any extra info on what weaknesses others were concerned by would be of interest.

(Am I in a bad mood? I responded almost entirely negatively to a positive summary. I guess I think that those who have built their careers on the the biopsychosocial approach to CFS need to be able to pull out surprisingly strong arguments, of they need to start apologising).

Thanks to Charles for his summary too.

some speakers were perfectly happy with the NICE guideline, and the validity of the PACE trial results, I think there was a unanimous acknowledgement that we do not have a really effective form of treatment for ME/CFS

Isn't there a bit of a contradiction there?

Would be good to know what criticism was made of the BMJ (and good to know that there was some).

 

[Jonathan Edwards]

I just 'lifted' lines from prof Edward's post :

'making sure that the plan suits the individual patient, taking them seriously and being supportive without pretending '

(Do not be offended prof Edwards )

But it amused me because I get the impression that the 'without pretending' bit should be 'without pretending that the patient has somatoform illness'

I've dealt with too many medics now which has made me very cynical when, since the guidelines came out, the medics, put on their straight faces and do their utmost to make sure the patient can see that they are being taken seriously. (But, of course, psychosomatic illness is 'real' and must be taken seriously.

I think I'll drift off now...

I think that would have to have been 'without pretending that the patient hasn't got somatoform illness' - i.e pretending that that is not really what is in their mind.

But, to be fair, I got no impression that this was on the clinicians' minds. I will expand in a longer response to Esther12. Maybe of interest, all the speakers on the medical issues (i.e. putting Lady Mar to one side) bar one, started off mentioning the IOM report, indicating that this was the sort of framework of ideas that everyone is now working with.

 

[Jonathan Edwards]

Thanks for the summary @Jonathan Edwards , and the speech @Bob (not read it yet though).

Hmmm... that actually sounds pretty bad to me. The 'reality of patient care'? Decided by who?

I do think you are being a bear with a sore head Esther12, but I admit that I might have shared your scepticism if I had not paid attention. When the first (paediatric) speaker started talking about practical management I was ready to hear a lot of preformulated ideas based on wishful thinking. But there was none of that. She explained where the clinician wanted to get to - which was where the child wanted to be, which turned out to be being able to play sport again (and some other things besides). There was no theorising. The modalities available were given and then most of the discussion was about how the patients perceived the value of the modalities and the clinician's approach.

So, actually, this was mostly a talk about realities as decided by the patients. Nothing was said about 'we find this works', only 'the patients said they thought this was important', and what the patients said was important was getting back to being active and being treated in a non-patronising way. The speaker deliberately removed 'exercise' from her programme and talked of activity - indicating that the issue was regaining what the patient wanted, not exercise per se.

You can always say that people dress up what they say for the occasion but I saw no evidence of that. Moreover, if what we are complaining about is the 'received wisdom' at medical meetings then that is what people actually say at those meetings. And what I heard almost everyone say is 'things have changed a lot, we are now (roughly) where the IOM say we are - having a rethink and focusing on realities rather than dogma'.

I will break this into posts to try to be manageable.

 

[worldbackwards]

That kid in the front is a bit scary!

I like him best!

Is it just me or does it seem that lately, these sort of things never turn out half as bad as we expect them to? A sign of the times maybe? Certainly a sign of some people's waning influence.

 

[Kati]

In my country, they are pretending that the care they are offering is patient-centered. Honestly, I think they are truly dressing the window. So they went all out on the bio-psycho-social-holistic, but they left the bio behind.

The treatments that I patients want Ampligen, Rituximab, cyclophosphamide, anti-virals, and even a simple saline drip, denied. Moreover, without telling me, I have been discharged from the program. We haven't even started.

Welcome to patient-centered care, Vancouver style. (Cattle style)

 

[Jonathan Edwards]

Despite it's flaws, PACE does provide some information that patients can use to make decisions about what they want to spend their time on. It's results need to be fully presented, with information about potential problems with bias and in the context of what we know about placebo responses... but it's still better than just leaving things to the 'clinical judgement' of those who've built careers on claiming to have expertise of value to CFS patients.

I have been thinking a lot about the CBT trials this week. What has hit me forcibly, for various reasons, is how off target much of the discussion is. The simple fact is that because of the nature of the therapeutic modality, the fact that it was unblinded and the choice of subjective primary outcome the PACE trial tells us nothing. Any attempt to extract an interpretation, whether positive or negative, is fruitless because we cannot tell why what happened did happen. Further analysis of details of trial structure is irrelevant. And it is not that the trial suffers from being too formal and ignoring patient individuality. I disagree (very amicably) with Charles on this but only in the sense that I think he is allowing the trial more than it deserves. The realities of individual patient experience are actually all we have to go on. The fact that a trial has a standard approved structure is no guarantee that it does not have a simple flaw that makes it uninterpretable. My NEJM RA rituximab trial had standard structure. The drug company wanted to say it proved that rituximab was specially effective with methotrexate. In fact the trial shows that rituximab is effective but nothing can be said about the use with methotrexate, because of a detail in the protocols. It took a court case to quash the patent the drug company wanted to get on combining rituximab with methotrexate. The devil is in the detail.

 

[Jonathan Edwards]

In my country, they are pretending that the care they are offering is patient-centered. Honestly, I think they are truly dressing the window. So they went all out on the bio-psycho-social-holistic, but they left the bio behind.

Actually not, Kati. The paediatric speaker said absolutely nothing about theory - zilch. And all the other speakers, including the psychiatrist who thought PACE was valid, only talked about biological mechanisms. We had immune, we had endocrine, we had supplements, we had autonomic, we have neuropathological, we even had xmrv. The words 'biopsychosocial' and 'somatising' were never heard all afternoon. The Beard paper on mass hysteria was mentioned by Charles simply to point out how far things have moved on.

You might say that yes, but they were all three (i.e. excluding Charles, Lady Mar and Luis) thinking biopsychosocial under their breath. But I think you underestimate the potential for changing minds. Medical opinion is driven by fashion. When fashions change they can change rather suddenly. I got the distinct impression that everyone had nipped out to Zara and got an IOM burnt orange bio-headscarf yesterday.

 

[user9876]

I do think you are being a bear with a sore head Esther12, but I admit that I might have shared your scepticism if I had not paid attention. When the first (paediatric) speaker started talking about practical management I was ready to hear a lot of preformulated ideas based on wishful thinking. But there was none of that. She explained where the clinician wanted to get to - which was where the child wanted to be, which turned out to be being able to play sport again (and some other things besides). There was no theorising. The modalities available were given and then most of the discussion was about how the patients perceived the value of the modalities and the clinician's approach.

So, actually, this was mostly a talk about realities as decided by the patients. Nothing was said about 'we find this works', only 'the patients said they thought this was important', and what the patients said was important was getting back to being active and being treated in a non-patronising way. The speaker deliberately removed 'exercise' from her programme and talked of activity - indicating that the issue was regaining what the patient wanted, not exercise per se.

You can always say that people dress up what they say for the occasion but I saw no evidence of that. Moreover, if what we are complaining about is the 'received wisdom' at medical meetings then that is what people actually say at those meetings. And what I heard almost everyone say is 'things have changed a lot, we are now (roughly) where the IOM say we are - having a rethink and focusing on realities rather than dogma'.

I will break this into posts to try to be manageable.

I worry about this. Looking at a sample of 1 not all children want to get back to sport. In fact not all children with ME did sport before hand. My wider point is that I worry that they hear things from one or two children and over generalise.

I've got the impression that at times paediatricians and those treating children do use more sympathetic language and have a more subtle approach basically of GET but using activity management and forced increased education as an activity rather than direct exercise.

I know I am guilty of over generalising from experience of the Bath paediatric ME service where they basically run a graded activity program. They too tend not to mention exercise. They promise 97% success but remove patients that they feel aren't following their programme (i.e. aren't getting better) and I was told that 'my child couldn't have CFS/ME since she had been ill for too long. She had CFS/ME (since their original diagnosis must be right) and they had cured that with their activity management program (consisting of a leaflet and an occasional phone call) despite no symptom change. But I was then told my child who was pretty much bed bound at the time must have been suffering from a dissociative disorder from the stress of being ill. I must say I wasn't surprised as I had heard that the clinic took that approach.

Ok so I am ranting but the language that you refer to with the paediatric speaker just sounds familiar.

 

[Keela Too]

The fact that a trial has a standard approved structure is no guarantee that it does not have a simple flaw that makes it uninterpretable.

As a science teacher (prior to ME stealing my active life) I agree with this statement.

When I was working we had students design and implement simple studies (eg effect of coffee on reaction times etc.) and often they naively introduced a bias to the results, which they were unable to see themselves.

Bias however is not always naive ..... and intentional bias can be disguised ...

 

[Keela Too]

Medical opinion is driven by fashion. When fashions change they can change rather suddenly.

I really hope that this will be the case. I like to think that the tide is now turning...

However this needs to be followed up with significant funding pointed in the right direction.
Without funding we will continue to re-arrange deck chairs....

Discussion of course comes first, and I'm pleased to hear that these discussions are happening. Thank you Jonathan, and Charles for reporting back.

 

[user9876]

I The simple fact is that because of the nature of the therapeutic modality, the fact that it was unblinded and the choice of subjective primary outcome the PACE trial tells us nothing. Any attempt to extract an interpretation, whether positive or negative, is fruitless because we cannot tell why what happened did happen. Further analysis of details of trial structure is irrelevant.

I suspect that we have over analysed the details. But this is partly due to lack of success in making the wider points around the subjective outcomes and lack of blinding. I actually think there is another important point which is that the trial aims to change peoples perceptions of fatigue and illness and then asks them about their perceptions. But I do wonder if patients experience in understanding the many more detailed methodological flaws has helped in creating a better awareness of the need for good methodology and care over what a trial says at least within the patient community.

I get an impression that some in the medical community would like to ignore the PACE trial because they know it was flawed. The problem is that White and the SMC keep promoting it and that leaves a need to discredit the results. I feel that if all the data was release it would discredit itself or at least the associated spin particularly around recovery. Although I think White didn't mention recovery figures in his medscape piece.

 

[charles shepherd]

Thanks for the summary @Jonathan Edwards , and the speech @Bob (not read it yet though).



Hmmm... that actually sounds pretty bad to me. The 'reality of patient care'? Decided by who? Despite it's flaws, PACE does provide some information that patients can use to make decisions about what they want to spend their time on. It's results need to be fully presented, with information about potential problems with bias and in the context of what we know about placebo responses... but it's still better than just leaving things to the 'clinical judgement' of those who've built careers on claiming to have expertise of value to CFS patients.

I find that worrying, especially in the context of this sort of attitude:






It would be really good to hear more about this. I doubt recordings were made (why let patients see what's happening? It would risk limiting what people felt comfortable saying) but any extra info on what weaknesses others were concerned by would be of interest.

(Am I in a bad mood? I responded almost entirely negatively to a positive summary. I guess I think that those who have built their careers on the the biopsychosocial approach to CFS need to be able to pull out surprisingly strong arguments, of they need to start apologising).

Thanks to Charles for his summary too.



Isn't there a bit of a contradiction there?

Would be good to know what criticism was made of the BMJ (and good to know that there was some).

My opening presentation was videoed (with an annoyingly bright light!) and my understanding is that a recording of the meeting will be placed on the RSM website with open access. But I will need to check with the RSM.

Although the meeting was only open to RSM members and health professionals who applied to attend, there were also some patients present - so there was no intention to keep the content of either the presentations, or the discussions, secret.

I can't recall anyone saying anything that they would not want to be repeated outside the meeting.

 

[A.B.]

I know I am guilty of over generalising from experience of the Bath paediatric ME service where they basically run a graded activity program. They too tend not to mention exercise. They promise 97% success but remove patients that they feel aren't following their programme (i.e. aren't getting better) and I was told that 'my child couldn't have CFS/ME since she had been ill for too long.

Sounds like fraud where CFS becomes "not CFS", and vice versa.

 

[MeSci]

I wonder if that guy ever bet on the wrong horse, them tried to pay the gas bill with his betting slip.

or a government decided to bomb the sh*t out of a country so as to be seen to be 'doing something'.

There are many times when doing nothing is better than doing a particular something. It requires restraint and maturity.