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New Forum Software Installed (Still a few issues but reopening the forum) More details.
Wonko
Senior Member (Voting Rights)
What possible reason could I have to trust AfME not to twist any responses to their own agenda, whatever that is. I've experienced this before with a multi-day public health consultation, organised by the then ruling political party. I was there, I know what the "delegates" agreed, and I know the total pack of lies that where what the press was informed of, and what policies emerged, which were pretty much the opposite of what had been agreed on.
AfME have form in deliberately misrepresenting us.
ETA - it is possible (even likely IMO) that the following response to the consultation could be released;
"after the largest survey of pwME AfME has ever conducted AfME have decided that CBT/GET should remain in the NICE guidelines, as they may help some people"
IMO AfME has shown itself to be opposed to the interests of most pwME, the more people that interact with them the bigger they can state their influence/representation is. If no one ever interacted with them again they, at the very least, couldn't legitimately claim to represent us, and would hopefully disappear up an appropriate orifice.
The more people who interact with them, the greater their ability to continue to do our interests harm IMO.
AfME have form in deliberately misrepresenting us.
ETA - it is possible (even likely IMO) that the following response to the consultation could be released;
"after the largest survey of pwME AfME has ever conducted AfME have decided that CBT/GET should remain in the NICE guidelines, as they may help some people"
IMO AfME has shown itself to be opposed to the interests of most pwME, the more people that interact with them the bigger they can state their influence/representation is. If no one ever interacted with them again they, at the very least, couldn't legitimately claim to represent us, and would hopefully disappear up an appropriate orifice.
The more people who interact with them, the greater their ability to continue to do our interests harm IMO.
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Melanie
Senior Member (Voting Rights)
I agree. Just pull away from this filthy organization that was the entire reason patients went into the PACE trial. This organization exists to exist. To have a job. They are manipulative and self-serving. They are afraid to go up against the psychiatric lobby. As a matter of fact if anythng should be given is feedback it is what @Wonko and I have written.
Action for M.E.
Established Member (Voting Rights)
Hello, Clare from Action for M.E. here. Thank you @Cinders66 for sharing the link to our survey.
When we respond to the NICE consultation on the scope for the guideline, we will quote quantitative and qualitative data directly from the survey (ensuring that they are anonymous - we don't ask for any names or contact details but sometimes people responding to our surveys give identifying information, which we redact before sharing in the public domain). We now have 189 responses so far, though not everyone who responds answers every question, and we will make this clear in our response to NICE.
Our survey asks 13 questions in total. Here's a sample of the data so far.
When we respond to the NICE consultation on the scope for the guideline, we will quote quantitative and qualitative data directly from the survey (ensuring that they are anonymous - we don't ask for any names or contact details but sometimes people responding to our surveys give identifying information, which we redact before sharing in the public domain). We now have 189 responses so far, though not everyone who responds answers every question, and we will make this clear in our response to NICE.
Our survey asks 13 questions in total. Here's a sample of the data so far.
- 34% of respondents have had M.E. for over 20 years, 25% for 10-20 years, and 19% for 5-10 years.
- 49% of respondents said they had moderate M.E. (according to the definition in the NICE guideline), 35% said severe, 12% said mild, and 4% said very severe.
- 42% of respondents said yes
- 20% said no, there are key issues missing that ought to be included
- 20% said they don't have a strong opinion on this section
- 13 said no, extra questions are required to make sure they cover the topics in enough detail
- 13% said no and gave other reasons
- 3% said no, I disagree with one or more of the key issues and/or draft questions that have been included, and think they need to be removed
- 54% said yes - I think it's mostly fit for purpose, although I would like to see some small changes
- 17% said no - I think some small parts are fit for purpose, but it needs a lot of changes
- 13% said yes - I think it's entirely fit for purpose
- 12% said not sure
- 4% said no – I don't think it is at all fit for purpose
I thought people on here might be more informed than the average sufferer and therefore their responses would affect what "might" otherwise be unwitting establishment supporting stuff which will be cited as patient opinion and form the basis of the charity stance. Unfortunately I'm too ill to contribute on this, I simply don't have the cognitive function to read complex stuff and make good decisions , I was hoping others could as "what should be our feedback on NICE draft" has already been discussed on here.
adambeyoncelowe
Senior Member (Voting Rights)
Thanks, Clare. One of the issues here, I think, is that if you're not informed about such documents, it might be too technical. Thus people may not immediately see any issues because they don't know what they're looking for.
I think a smarter way to have gone about this is to first dissect the scope, pointing out possible issues and things that look positive, and then asking your members to vote on those things. This feels like a backwards way to go about it.
For instance, I attended all the NICE stakeholder meetings, and even I haven't fully decided what needs to go in/come out/be reworded. I don't know how a lay person is supposed to decide the scope is good if they don't know what it's actually doing/saying.
Action for M.E.
Established Member (Voting Rights)
Thanks @adambeyoncelowe - this is really useful feedback and something we could consider when we survey people affected by the M.E. on the full guideline. My concern with this approach is that we might be putting words in people's mouths, and potentially look like we are leading respondents to take a particular viewpoint. Being open to the wide range of responses from people living with M.E. is essential if we want NICE to seriously consider the data we present.
I also think that even if someone with M.E. is not informed about such documents, they are certainly experts at living with the condition, which makes their feedback invaluable.
I also think that even if someone with M.E. is not informed about such documents, they are certainly experts at living with the condition, which makes their feedback invaluable.
Action for M.E.
Established Member (Voting Rights)
If anyone is unable to complete the survey, but still wants to share their view for our response, please email us directly at policy@actionforme.org.uk
One concern is the evident fuzziness in uk regarding name, definition, criteria etc. So someone with predominantly unexplained fatigue might be given a CFS medical diagnosis, join AFME, think "defined by fatigue" as NICE says is just fine and vote for weak definition and Continuing of behaviour approach as that helped them. Their feedback is then quoted as a PWME & applied to represent the M.E population.
It's clear from Facebook that a lot of patients aren't even aware at the various criteria and alternative definitions out there, aren't aware of the arguments for refining the broad uk umbrella, aren't aware of issues with applying Oxford criteria research as a basis for ME management advice etc.
Andy
Senior Member (Voting rights)
Or you can check our members comments on the different sections of the draft scope in these threads.
Section 1. Why the guideline is needed. - https://www.s4me.info/threads/membe...-the-nice-me-cfs-guidelines-draft-scope.4814/
Section 2. Who the guideline is for. - https://www.s4me.info/threads/membe...-the-nice-me-cfs-guidelines-draft-scope.4815/
Section 3. What the guideline will cover - https://www.s4me.info/threads/membe...-the-nice-me-cfs-guidelines-draft-scope.4816/
We will be incorporating these into our own response to NICE.
Andy
Senior Member (Voting rights)
Hold on, your numbers add up to 111%, how does that work?
adambeyoncelowe
Senior Member (Voting Rights)
Hi Clare,
I'm pleased you'll consider that. I understand that point of view, too, but I think pwME wouldn't object to a bit of jargon-busting and careful consideration from a trusted source. The ME Association does this, for example, with their own write-ups of major research as it comes out and explanations of the various processes, like NICE, etc.
I think it can help cut through a lot of the conflicting info out there. People rely on the charities to do this, since the NHS is often so ill-informed or outright hostile to us.
It's also a matter of how you present it. If you say 'we think this is bad', that's tangibly different to 'we notice that this wasn't included--should it be?' The latter is a more nuanced and empowering approach, because you're giving people the chance to make a fully informed decision.
Snowdrop
Senior Member (Voting Rights)
Indeed.
It becomes awkward but there might need to be a question asking respondents to indicate what criteria/definition they meet for their diagnosis.
I know that AfME take a lot of flak from us. It would be so great to be able to believe that AfME are fully and completely on the patients side advocating in what we know is our best interest.
Taking on patients views is a step in that direction but I agree with others that why with this. The stakes are pretty high and the traditional support for AfME is from a patient population that is less likely to be fully informed on the history and politics leading to this and more likely to a) have accepted the 'authoritative' historical narrative without looking further b) have been diagnosed using loose criteria. I see that as a problem.
Also, I think that it is possible to clearly express the issues around why the guidelines are being looked at that is neutral and informative without leading people to any conclusion.
adambeyoncelowe
Senior Member (Voting Rights)
But at the same time, they're expected to support their constituents, regardless of who those constituents are. You can't fault them for supporting the views of those who support them, rather than those who do not.
I don't think it's helpful to ignore AfME's supporters as 'not real ME patients' or whatever, anyway. There's no real evidence that they differ from any other ME charity's patient cohort in proportion of ME to non-ME cases.
But I do think patients will expect charities to highlight if there are any problems, too. Not doing so might imply the document is fine, or at least not a major issue, and from a patient perspective, it might seem fine. It would make more sense to open an honest discussion about each of the sections of the scope, so that patients can see what's going on, and what's being missed. Then patients might quickly realise that there are things they very much wished were in there.
If you give the average person off the street the PACE trial, they might not see any problems at all. They might accept it at face value.
If you instead have a discussion with them, pointing out what is and isn't done in science, and why--and giving them the tools to understand and pick apart the science in the paper--then they might form a very different opinion.
Democracy is no good if you keep your public ignorant. People need to be informed to make meaningful, considered decisions.
arewenearlythereyet
Senior Member (Voting Rights)
I would say that AFME seem to have a rather warped sense of propriety. Of course you debate a complex subject properly before asking for opinion, especially if it’s going to be used as evidence!
This is a complex issue and to try and whittle it down to a spot survey with no debate seems ridiculous...or perhaps this is in support of contriving a reason to keep the NICE status quo? Don’t forget many of their members have been kept in the dark for years with a watered down BPS endorsement.
Perhaps they should survey whether AFME should change their ways and help their members understand the NICE guidelines by explaining it properly. Or perhaps do you understand the current issues surrounding the current NICE guidelines?. This might be a better question for members?
One question yes/no ?
I suggest this survey is not completed by S4ME members until AFME commit to inform their members of the issues rather than keep them all in the dark.
Of course they would have to admit that they got it wrong all these years and didn’t speak up for their members all that time? They can’t even bring themselves to reject GET properly in their latest amendment so I don’t hold out much hope that things will change.
I’m not filling in their survey btw in case that wasn’t apparent.
This is a complex issue and to try and whittle it down to a spot survey with no debate seems ridiculous...or perhaps this is in support of contriving a reason to keep the NICE status quo? Don’t forget many of their members have been kept in the dark for years with a watered down BPS endorsement.
Perhaps they should survey whether AFME should change their ways and help their members understand the NICE guidelines by explaining it properly. Or perhaps do you understand the current issues surrounding the current NICE guidelines?. This might be a better question for members?
One question yes/no ?
I suggest this survey is not completed by S4ME members until AFME commit to inform their members of the issues rather than keep them all in the dark.
Of course they would have to admit that they got it wrong all these years and didn’t speak up for their members all that time? They can’t even bring themselves to reject GET properly in their latest amendment so I don’t hold out much hope that things will change.
I’m not filling in their survey btw in case that wasn’t apparent.
TBH I think there is as AFME have the stance of ME=CFS, don't commit to any criteria or discuss these issues and we know that Drs are diagnosing broadly and Misdiagnosing too. NICE guidelines are requiring fatigue, PEF and sleep issues to be called ME. The Suffolk service discussed elsewhere was diagnosing via Fukuda, with perhaps optional PEM. Given what MEA present, more science, more discussion on name criteria suitability, I think the ME Patients are likely to self identify with them if they meet stricter criteria. There are people on AFME Facebook who say everyone can get better like they have, refusing to let the illness beat you is important, LP or pushing on worked for them etc. That isn't ME or informed patients
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Alvin
Senior Member (Voting Rights)
@Action for M.E. Instead if ignoring the world's biggest elephant in the room how about addressing it...
Action for M.E.
Established Member (Voting Rights)
Sincere apologies, my mistake. The figures should read (and they are slightly different now, as we've had more responses overnight):
- 40% of respondents said yes
- 21% said no, there are key issues missing that ought to be included
- 21% said they don't have a strong opinion on this section
- 13% said no and gave other reasons
- 3% said no, extra questions are required to make sure they cover the topics in enough detail
- 2% said no, I disagree with one or more of the key issues and/or draft questions that have been included, and think they need to be removed
When we respond to NICE, we will give detailed answers that set out the issues and concerns with each section. Based on the data here, 39% of respondents did not agree that this section is appropriate - that's a significant proportion.
Thank you also for the links to the various S4ME threads commenting on the scope - I will share these with my team.
arewenearlythereyet
Senior Member (Voting Rights)
No ...this is not how you report the figures
You say 56% wanted the NICE guidelines changed for various reasons
If you say 39% you mislead inferring that 61% thought they were fine. Even with this rather strangely structured questionnaire you can’t be that misleading (unless you are taking advice from Sharpes statistians)
ETA:
Not sure where my 56% (too early) came from but the main point is that 21% of people don’t care one way or another. Taking these out you have a near enough 50:50 split of people who expressed an opinion. However you have to ask yourself why 21% of people don’t care ....10% I could understand as questionnaire fatigue or similar (especially if the question is too much of an investment of time) but over a 5th of people? It may be an artefact of the questionnaire but I would be interested to know what level of people respond this way in other opinion surveys?
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