• Phoenix Rising needs funds to operate: please consider donating to support PR

#MillionsMissing UK Protest Demands - Survey

Messages
21
Likes
84
Location
UK
Hello everyone, I hope you're keeping as well as possible amidst the madness and excitement at the moment!

I wanted to highlight this survey which will greatly help determine what the UK community would like to see in the protest demands for this September.

Question 2 of this survey refers to the NICE guidelines, and I'd like to quickly clarify a side note there.

We definitely feel that the NICE guidelines must and will, eventually, be reviewed with the abolition of GET and CBT. However, at this point in time, given the uncertainty around PACE and next year’s reassessment, and lack of clearer evidence-base for new treatments, our call for an immediate review may not be taken seriously.

With perseverance and a little time, hopefully we can address the issue of NICE in the very near future.

So for UK folks, please do take a couple of minutes to fill out the survey and have your say. I'll be setting up a call in a few weeks to open the discussion "face to face". It's incredibly important to me that these decisions are as community-wide as possible.

Thanks everyone.

https://www.surveymonkey.co.uk/r/6GXR3Q8
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,212
Location
UK
We definitely feel that the NICE guidelines must and will, eventually, be reviewed with the abolition of GET and CBT. However, at this point in time, given the uncertainty around PACE and next year’s reassessment, and lack of clearer evidence-base for new treatments, our call for an immediate review may not be taken seriously.
What's the reassessment next year that you're referring to? Is something planned?

Thanks very much for all your hard work on this! :thumbsup:
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,212
Location
UK
NICE guidelines are already due for review in 2017, which will hopefully show some improvement!
But weren't they due for review once before, and placed on the static list instead of being reviewed? @charles shepherd has been pushing for immediate review via the APPG and he said he's hit a brick wall, even though there seems to be agreement that there's a strong rationale for it.

Meanwhile, patients are being exposed to GET every day. I worry about how many more will be harmed before the guidelines are reviewed. "2017" could be "December 2017", even if the guidelines are actually reviewed.
 
Messages
21
Likes
84
Location
UK
I agree, it's a scary thought. I was told they were definitely up for review....

But regardless, the fear is that calling for an immediate review without sufficient replacement treatments may be pointless and produce no reaction. However, it's not my decision of course, it's always going to be a community wide choice, and I really respect that.
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,212
Location
UK
I agree, it's a scary thought. I was told they were definitely up for review....
Can you say who told you that? That might be the data on their website but it might just mean that they'll review their decision to keep it on the static list (and could easily decide against).

But regardless, the fear is that calling for an immediate review without sufficient replacement treatments may be pointless
If a treatment is ineffective and harmful, it's not pointless to remove it.

Charles Shepherd had a load of suggestions about what they should be doing (Vit D for deficiency, OI tests, etc.). But even without that, an ineffective and harmful treatment needs stopping.
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,212
Location
UK
I hope #MMUK might reconsider the steer they're giving people on the questionnaire about this item.
 
Messages
21
Likes
84
Location
UK
I definitely don't doubt that, and I personally don't see it as pointless, just worry that the big wigs will. Of course if there are sufficient replacements as well, maybe they can be included in the demands if that's the way we go. :thumbsup:

The NICE guideline review actually came from several people.
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,212
Location
UK
I definitely don't doubt that, and I personally don't see it as pointless, just worry that the big wigs will. Of course if there are sufficient replacements as well, maybe they can be included in the demands if that's the way we go. :thumbsup:
I think it's going to take quite a while for drug treatment trials to come through - years for enough evidence on rtx for UK use, for example. We shouldn't wait years to take GET and GBT down.

The NICE guideline review actually came from several people.
Sorry, what I really meant was, did the info come from anyone who could authoritatively state that the guidelines will be reviewed in 2017? Someone from NHS England, or the APPG, etc.?
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,212
Location
UK
I think there is little point in calling for a review of NICE guidelines unless the people on the committee are changed. They are biased and will come up with the same answer (whatever the evidence).
We don't have control over who is on the committee. It could be years and years before they're changed. Should we wait all those years to ask for a review?
 

AndyPR

Senior Member
Messages
2,516
Likes
18,192
Location
Guiding the lifeboats to safer waters.
May be it's my brain fog but question 4 confused me.
Given GMC's imposed conditions on Dr. Nigel Speight's practice, would you like to see wider treatment choice for doctors to treat ME as physiological if they see fit included in the demands?
Is this just asking "Should ME be treated as a physical, rather than psychological, condition?" Obviously, if so I'd answer yes but then what would the treatments be?
 
Messages
21
Likes
84
Location
UK
May be it's my brain fog but question 4 confused me.

Is this just asking "Should ME be treated as a physical, rather than psychological, condition?" Obviously, if so I'd answer yes but then what would the treatments be?
Sorry, Andy, it was a tough one to word. Hopefully I can explain better...

The question aims to determine whether or not we should challenge the ethics of GMC's right to restrict doctors from treating the condition as physical during THIS protest. That is, whether we should say "Dr. Speight has the right to treat ME how he sees fit (i.e. physiological, not psychological) rather than being told not to do so."

Hope that clarifies things a bit.
 

Valentijn

Senior Member
Messages
15,786
Likes
45,630
However, at this point in time, given the uncertainty around PACE and next year’s reassessment, and lack of clearer evidence-base for new treatments, our call for an immediate review may not be taken seriously.
The long-term followup has shown CBT and GET to be ineffective. And I'm not sure why you think a lack of alternatives means that CBT and GET will continue to be promoted even when they are shown to be ineffective.

And from the Survey:
1. In the event that the PACE Trial data is released prior to the #MillionsMissing protests in September, which action would you most like to see taken?
  • An independent review and reanalysis of the PACE Trial.
  • An official retraction of the PACE Trial by The Lancet.
These are not demands which can be met by any institutions targeted by a protest. No one can be forced to review the PACE data, and there's no need demand a review when there are already people willing to review it.

The Lancet will retract when PACE has been proven fraudulent or otherwise meets their standards for retractions. And a correction of the flawed recovery figures and conclusions would be much more useful than a retraction.


2. Which action do you think is most realistic, and best suits the needs of people with ME at this time?
  • All GPs and medical practitioners must inform patients of possible harm/long-term effects when recommending Graded Exercise Therapy.
  • A comprehensive review of the NICE Guidelines, including withdrawal of GET. (Please note: The #MEAction Network UK does not recommend a review of NICE at this time, though strongly advocates a democratic decision on this matter.)
You seem to be suggesting that only one of these is possible, and you are stating a clear preference for one over the other.

3. Which of the latest scientific research would you like included when calling for better education of GPs and medical practitioners? (Please select all that apply.)
  • The Institute of Medicine's report.
  • Columbia University's Mailman School of Public Health findings in blood plasma.
  • Research into Rituximab.
  • Cornell University's findings in gut bacteria.
This is a strangely detailed question to be asking. And it assumes that the "right" answer will be chosen by respondents to Question 2.

4. Given GMC's imposed conditions on Dr. Nigel Speight's practice, would you like to see wider treatment choice for doctors to treat ME as physiological if they see fit included in the demands?
What's the point in even asking the question?

You are not taking a survey. You are using a survey to push a specific agenda. I think you are also forgetting the purpose of a "protest", which is to spread awareness of existing problems and make demands which the targeted institutions can rectify.
 
Last edited:
Messages
21
Likes
84
Location
UK
Definitely understand a lot of your points here.

The survey was actually based on May's protest demands as well as conversations afterwards about what the community felt we had to push for the next time, the biggest concerns etc.

There'll be a call for the protest demands in a few weeks which I will set up soon so that everything can be put on the table and discussed thoroughly. More points can be raised and we can finalise what the majority would like to include in the call for action, regardless of any other factors. Meaning if the vote goes for an immediate review of NICE, that'll be there 100%.

The survey only includes the main talking points which have been posed to me for long periods of time, and certainly doesn't have everything on there that are causes for concern, which is why I think/hope a call to hash it all out would be really beneficial.
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,212
Location
UK
These are not demands which can be met by any institutions targeted by a protest. No one can be forced to review the PACE data, and there's no need demand a review when there are already people willing to review it.
A review of what the hell happened is one of the demands made to The Lancet in the scientists' open letter. The reanalysis I agree isn't something to demand. Alem Matthees requested the data so he could reanalyse it and anyone will be able to - once it's released to him, it's released to anyone.

The Lancet will retract when PACE has been proven fraudulent or otherwise meets their standards for retractions. And a correction of the flawed recovery figures and conclusions would be much more useful than a retraction.
The Lancet will continue to fail to correct or retract faulty analyses until absolutely forced to do so, IMO - the 12k petition requested this and was ignored.

You are not taking a survey. You are using a survey to push a specific agenda.
It has been hard to find a forum in which these issues are being discussed by the #MM group but I think that's an issue to do with #MEA/#MM being extremely short of boots on the ground, and a bit of a scrabble for very sick people to try to find a way to organise and consult in what in ME terms, is an extremely short timeframe.

It's now only about five weeks to go, and it's not long for people to have input. But I hope that the framing of this question as "We're asking you, but here's what we think" can be removed.

I think you are also forgetting the purpose of a "protest", which is to spread awareness of existing problems and make demands which the targeted institutions can rectify.
I'm assuming that the demands will be targeted, when the time comes.

I think we're learning that having #MM splattered across a thousand platforms has made participation difficult so far, and I hope this can be resolved - if not in time for September, in time for the next protest.
 
Messages
1,267
Likes
7,435
I think one of the problems with the NICE guidelines is that while there is a specific recommendation then the powers that be can hide behind it - any question can be batted back with a stock answer. Research has shown (even if it really hasn't), lack of evidence to the contrary (even though there is and there would be even more if you would just fund some decent biomed research etc).

They like the status quo because they can pretend that something is being done (and just gloss over the harm being done to patients in the meantime).

We need them to face up to the fact that even just general management guidelines (pacing) and dealing with OI, vitamin deficiencies etc is far better than guidelines which do not really help anyone with the condition and are potentially harmful to many.