Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

Sasha said:
There's nothing in that to say that PWME shouldn't be encouraged to pace themselves and use other management techniques.
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Yes. Crucially, it would need to be proper pacing, which I suspect might need differing approaches for different people. My wife seems to have a natural instinct for it, and I imagine that must be true for most PwME. But maybe not everyone. And probably gets more tricky the more severe you are.
 
i think there is something very wrong with our attitude to kids and schooling, also adults and being ill.

we favour the push through it and you are a hero. or don't go to school start legal action.

when i had ebv i was advised to rest and bed rest for a couple of months at least.

i recovered, though my friends who had it at school had much worse outcomes. one sweet girl was dead before hitting her 40th.

the difference was the initial rest when viral infection took hold.

i think we could save many from becoming very ill long term by just this simple advice.

i wish someone had told me this, i guess thats why we are all so against this cbt get stuff.

i think it is informed consent we are after here. if they are gonna offer it then they must give informed concent to hte patients saying there have been cases where people have become must worse or even in some cases led to death after get.

we want a reporting scheme like with medicines so every case if they continue to advise get can report the harms.

it says it will be forming advice for the ccgs. thats the local services planning.

i don't think it is to much to ask for a proper health work up clinic for pwme dx and chronic fatigue cases to get proper dx too.

i am sick of hearing people years sometimes 20 or more people get re dx

we need to think about our rights. we all feel the discrimination i am sure
 
susanna said:
Jonathan Edwards, you say, 'There was also a suggestion that there is scientific evidence for GET being bad for patients but the reality is that there is none. We simply have the experience of patients to go on. '

Given that patients' reports of their experience of GET are not generally believed, what biomedical evidence do you think would satisfy the profession of a causal relationship of harm from GET? (eg, the equivalent of h. pylori) We find that even physical evidence of abnormalities following exercise is often interpreted to satisfy the bps concepts.
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Actually that evidence does exist. I've just been reading this document https://b1ad200d-a-62cb3a1a-s-sites...1NjJ4cNfPdimplA4dVUQaNO99u1mA=&attredirects=3

In it certainly one and I think 2 of the participants have reported on social media that such data was, at least initially, collected during the trial. It was either abandoned or never reported. Wonder why eh?
 
Maggie said:
Actually that evidence does exist. I've just been reading this document https://b1ad200d-a-62cb3a1a-s-sites.googlegroups.com/site/pacefoir/pace-trial-participants-experiences.pdf?attachauth=ANoY7cpdHYMTIB_kVNIQvKxcbPmnXb-MvjKNnw7i428mY1GpTCMgPO6NOJ3UoW_R0UXxSmj2BlTYkGVnlhD9_VU4yjC8ZnHsOZ7zzLTWJkmrXejqbAOr3i4cXIeXZ6s66U8_aJCMiAyqmo0BUSEyYODISCtmC-RypRbAQlnFKxh46OTCwrxGEdWqxInCtC03B0j_d_gsr94yD357ydxSb1vp7C1NjJ4cNfPdimplA4dVUQaNO99u1mA=&attredirects=3

In it certainly one and I think 2 of the participants have reported on social media that such data was, at least initially, collected during the trial. It was either abandoned or never reported. Wonder why eh?
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I was actually referring to evidence based on scientific understanding of diseased physiological mechanisms. At the moment we do not know enough about mechanisms to say there is any.

It is interesting that negative effects seem to have been collected in PACE. I could not access the link because of something to do with cookies, though.
 
Keela Too said:
Agree @Barry Also I think it is a concern that there is a yellow card system for pharmaceuticals, but not for psychological/psychiatric therapies. So how can GPs and patients officially report problems with GET/CBT?
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I think there are also issues with the CFS services as they do not record when patients report serious deterioration from their treatments.
 
Keela Too said:
Very good rant Trish, but why wait til "after diagnosis" to give the advice?

Sure, it may be unwise to diagnose a patient with ME when they are only in the first few weeks of experiencing problems, BUT early advice such as you list could be excellent as a precautionary measure - until such times as things become more clear.
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I thought one of the good things about the IoM report was they advised that a diagnosis should require 6 months fatigue but advice should be given before that.
 
That document of PACE trial anecdotes was such a wise submission in response to attempts to present PACE trial critics as eager to hunt down and harm trial participants. As well as dealing with that, it's a powerful reminder of the human side to the many problems that surround PACE.
 
Jonathan Edwards said:
OI is clearly an important symptomatic issue but I am unclear that hypermobility is really of relevance to guidelines for ME/CFS.
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Anecdotally more than one M.E Dr reports up to a 1/3 of patients have co morbid hypermobility or EDS3. I know its not a study, but these need to be done. A very large group of us have EDS, OI of some kind and then usually MCAS as well. Some of these co morbid conditions can have symptoms treated.

I have myself had to pursue private Drs to get these correct diagnoses, as once one has CFS or M.E on ones medical records all further investigations tend to stop. OI and MCAS can both be very disabling and can be treated.

Saying that exercise 'aggravates symptoms' in PWME is a gross understatement. Some people are irreversibly harmed by exercise and can never get back to their original baseline after periods of pushing themselves.
 
I've not read the whole thing yet but this jumped out:

from the downloaded document othersideofvenus said:
The assessment/criteria forms which had to be filled out at the before and during the trial, did not mention symptoms after exertion or mention delayed onset fatigue, there was very little attention paid to pain and cognitive/mental issues were blurred.
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If you don't ask questions designed to pick up PEM, you won't find PEM.
 
15. Alison Paice, in the GET arm:
. I was provided with a heart rate monitor at the start of the trial period and had been monitoring this daily while I walked (recording the resting heart rate beforehand, the highest recorded rate during the walk, the rate at the finish, and the time taken to return to the resting rate). My heart rate was showing higher readings as the trial progressed and I became more and more unwell as the exercise continued daily. I was reporting back to a physiotherapist and after several months with this trend increasing she did say that they had not expected this result from the heart rate monitor — and several times asked me to re-turn the monitor as she felt these results did not bring anything useful for the trial, so she suggested we stop keeping records of the heart rate readings. I refused as I felt they were important and did not under-stand how a medical trial could possibly be impartial if the criteria were changed to ensure only expected results were recorded? I'm not an expert, but I certainly felt that my results were not being viewed impartially.
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[My bold]

Surely to god that must have breached some law or other. Or is the law an ass here?
 
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Barry said:
Surely to god that that must have breached some law or other. Or is the law an ass here?
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Given the terms of that 1989 paper by David, Wessely, Butler and Chalder which we have discussed elsewhere and which showed that there was an awareness of the possibility of harm arising from exercise, it might have been worth looking into the matter.

In the other place I did start a thread trying to consider what measures would have to be put in place to avoid the possibility of an action for negligence, if nothing was done to prevent harm to a participant in the trial, but the time was not right for such a discussion. Either that or my unusual talent for killing a discussion. Takes years of practice.
 
Jonathan Edwards said:
And I have yet to see convincing evidence for any real association with hypermobility - which now tends to be called EDSIII.
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Jonathan Edwards said:
OI is clearly an important symptomatic issue but I am unclear that hypermobility is really of relevance to guidelines for ME/CFS.
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Justy said:
Anecdotally more than one M.E Dr reports up to a 1/3 of patients have co morbid hypermobility or EDS3. I know its not a study, but these need to be done. A very large group of us have EDS, OI of some kind and then usually MCAS as well.
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It would benefit many people with, or suspected of having, ME/CFS to be examined by a knowledgeable specialist for hEDS. It should be in the new guideline to be considered for differential diagnosis or co-morbidity in my opinion. The impact on health of EDS goes beyond joint pain and dislocations, it's multi-systemic.

I've seen reported that Prof. Rodney Grahame believes many people with an ME/CFS diagnosis have hEDS/EDSIII and I've been told anecdotally by my sister that he believes this when he diagnosed her with EDSIII. I've not found a primary source for that yet, but if anyone one knows of one I'd be grateful if you'd message me with it.

It seems to me the confusion about the differences between ME and EDS needs clearing up with research.

Subject for another thread I think.


edit - for clarity and to add - The impact on health of EDS goes beyond joint pain and dislocations.
 
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It seems to me that if people harmed by GET during PACE voluntarily were prepared to give legally binding sworn affidavits of harms due to GET during PACE, and especially re any safety measures subverted during PACE, then it would only need, say, 3 good solid cases to give strong justification for NICE adding an interim modification to the current guidelines, stating that until the full review is completed, GET is actively suspended from the current guidelines.

If NICE appreciated the significance of any further such affidavits arising out of GET administered by NHS practitioners following the NICE guideline, prior to the new guideline is published, they just might want to check their position very carefully with their lawyers.

Note when I speak of field evidence, I'm talking about something much more potent than anecdotal evidence; hence the need for legally binding signed affidavits. To get this interim shutdown of GET in the current guidelines, it absolutely should not be necessary to have full blown scientific trial evidence of harms, but legally binding statements of harm, with as much detail as possible. This is akin to a product recall. If there is clear enough field evidence of potential for harm, the recall can be activated before the fault mechanism is fully understood.

If this were something to go with, I would think it a big mistake to try bundling CBT into the interim suspension, because it would just muddy the waters very badly, and is much less crucial in the interim. CBT should get sorted in the full update, and GET being suspended before that would be a major step in the shorter term.

How come this stuff never got fully reported in PACE anyway. It should be illegal not to! Another FOI request re this sort of data might be very fruitful especially if any individual participants gave their permission.
 
'I was provided with a heart rate monitor at the start of the trial period and had been monitoring this daily while I walked (recording the resting heart rate beforehand, the highest recorded rate during the walk, the rate at the finish, and the time taken to return to the resting rate). My heart rate was showing higher readings as the trial progressed and I became more and more unwell as the exercise continued daily. I was reporting back to a physiotherapist and after several months with this trend increasing she did say that they had not expected this result from the heart rate monitor — and several times asked me to re-turn the monitor as she felt these results did not bring anything useful for the trial, so she suggested we stop keeping records of the heart rate readings. I refused as I felt they were important and did not under-stand how a medical trial could possibly be impartial if the criteria were changed to ensure only expected results were recorded? I'm not an expert, but I certainly felt that my results were not being viewed impartially.'

This is what people do all the time when you have unblinded experiments with an option to massage the results. It happens in science labs and clinics all over the world. Which is why we need proper methodology. You know this sort of thing is going to happen. In most clinical trials now it is factored out of the methods but physios have never cottoned on to the need for such methods. In rheumatology we grew ouof trials of this sort. It seems that the psychological medicine people never did.
 
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