Forward-ME Group Minutes – 21st November 2018

6.2 Dr Charles Shepherd had some important information about the NICE guideline. He had been in e-mail contact with Peter Barry, the Chair. He wants us to produce some new patient evidence on CBT and GET. The time limit for producing this is fairly short; they want it by March 1st 2019. What they would really like is another survey like that done by the MEA in 2014, but up-to-date and including evidence of harm (particularly from GET) supplied by the patient community. Charles had put together a skeleton for the survey which he would e-mail round to members. But developing it would mean a lot of work – so we need to work together on this. Was there someone who could organise an online survey using Survey Monkey or something similar?
 
Andy said:
6.2 Dr Charles Shepherd had some important information about the NICE guideline. He had been in e-mail contact with Peter Barry, the Chair. He wants us to produce some new patient evidence on CBT and GET. The time limit for producing this is fairly short; they want it by March 1st 2019. What they would really like is another survey like that done by the MEA in 2014, but up-to-date and including evidence of harm (particularly from GET) supplied by the patient community. Charles had put together a skeleton for the survey which he would e-mail round to members. But developing it would mean a lot of work – so we need to work together on this. Was there someone who could organise an online survey using Survey Monkey or something similar?
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While obviously in ME Association and ME community interest generally to do this if it is of such importance to NICE they could provide resources needed to deliver it rather than imposing additional demands on hard pressed patient organisation.
 
NelliePledge said:
While obviously in ME Association and ME community interest generally to do this if it is of such importance to NICE they could provide resources needed to deliver it rather than imposing additional demands on hard pressed patient organisation.
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Although I see your point, they may also feel that the MEA and ME community are likely much better placed to gather reliable information. They also might feel, with some justification, the patient community would not trust something different. It does demonstrate a willingness to engage in patient involvement.
 
Barry said:
Although I see your point, they may also feel that the MEA and ME community are likely much better placed to gather reliable information. They also might feel, with some justification, the patient community would not trust something different. It does demonstrate a willingness to engage in patient involvement.
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Agreed but they could help out with costs
 
Will anyone get a chance to see the proposed survey questions before they go public? Because the design of the survey is crucial. The medical community really does not seem tuned in to what actually constitutes harms for PwME. Deterioriation is a vitally important form of harm, but I suspect has been largely dismissed / overlooked by those information sources NICE previously relied on. When it comes to evidence of harms, I would have thought the standard need only to meet "on balance of probabilities", rather than be 100% incontrovertible. If there is strong anecdotal evidence a model of car's brakes are failing in given circumstances, the cars are recalled well before a full scientific investigation is done; that comes later, without delaying until many more people have died.

If a survey can capture strong correlation between harms following GET, compared to those who have not done GET, then that would be very good. But it's crucial the survey asks the right questions.
 
I see that Forward ME has not yet chosen to be viewed as a reputable organisation by editing its website in appropriate manner. One can only hope that some of the new female membership have the balls to do what is necessary.
 
Morning,

You should see promotion of the survey from Forward ME later today or tomorrow.

All member charities will promote it on their websites and social media channels so hopefully it will be shared far and wide.

It will be seeking feedback from people who have had CBT and/or GET as a result of a diagnosis of ME/CFS/PVFS in the UK since 2007 either from the NHS or privately.

All the best

Russell
 
Trish said:
Excellent, thanks @Russell Fleming.
I don't know whether you can answer this, but what about people who have received group and/or individual NHS ME/CFS clinic sessions that purport to be about pacing but are actually about finding a baseline and then adding planned increases in activity every week?
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This definitely needs to be made clear and captured many of us have been through PACE-lite in recent years and it’s actually probably later that you realise it was a wolf - PACE-lite programme in sheep’s -activity management/pacing - clothing.

ETA IF you actually realise it at all. you may of course still believe that is what pacing really is.
 
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  1. DWP
    The Chairman said she was sorry that Christine Harrison was not present. She had worked incredibly hard with the providers and had now got them to revise their training manuals. The Chairman asked members to let her know of complaints they receive about bad treatment by the benefits agencies. Carol Monaghan added that she would be meeting the DWP soon, so she could convey any complaints we wish to inform her about."
Anyone know any more about this?
@Russell Fleming

(hope to god AfMEs latest guidance has not 'helped' with the revision of the training manuals)
 
Morning,

We're just waiting on the university to release the final survey and then it will be promoted across charity websites and social media. So, later today I hope.

@Trish NICE were specific in that they wanted more recent feedback from people with ME/CFS/PVFS who had experience of CBT and/or GET so the survey it focused on those approaches.

However, there are several 'open text' boxes where people can provide explanations. I am not sure if this will cover what you ask.

Personally, my own experiences will be excluded from the survey, but then they formed part of the wider 2012 ME Association Illness Management Survey that was published in 2015 and which NICE already has as evidence.

All the best

Russell
 
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