CALL TO ACTION! NICE ARE BETRAYING US!

justinreilly

justinreilly

Senior Member
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2,498
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NYC (& RI)
Moof said:
Should we not keep our powder dry for a bit, and wait to see some preliminary outcomes? I'm worried about making it too easy for patients to be portrayed as hysterical (etc) if we go in before the panel has done or said anything...they're very unlikely to change their minds about the appointments, so I think we need to know exactly what we're challenging before we put too much energy into it. That's my instinct, anyway.
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Jackdaw said:
I think it’ll be too late then. And we know what we are challenging, a biased panel. If they won’t change their minds on appointments, they won’t change anything further down the line. And maybe i’m being optimistic but the earlier the clamour, the greater the pressure for a fair review. Although I was niave enough to think, with everything, NICE wouldn’t have picked a panel anything like this. But to stay silent now, for fear of being portrayed as hysterical, when there are more than obvious grounds for complaint, feels unwise to me. We shouldn’t be afraid to complain.
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andyguitar said:
In my considered opinion the NICE panel is so bad nobody within the ME/CFS community should have anything to do with it. Boycott it. It's a massive stitch up. Hope for the future will come from scientific research. NICE are not interested in science.
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I absolutely agree 110% with Jackdaw! This is a lot like the Institute of Medicine and HHS panels that HHS sprung on us to try to get their anti-science propaganda enshrined even further. We realized this was an absolute disaster if this went ahead as they were staging it. They had panels that consisted entirely of ME anti-science charlatans rounded out with doctors who had no knowledge of ME whatsoever and were bound to only look at the "Evidence Based Science," ie the BS anti-science. It would have set us back a decade or decades. We had no choice to fight with whatever we could muster.

We wrote in to and called to IoM and HHS to get the processes cancelled, or failing that, to change the panel. We wrote blogs, contacted media, contacted politicians who then wrote to HHS and IoM. 30 of our clinical and research experts signed a letter protesting the report process and urging that CCC be adopted as the official CDC definition. IoM and HHS replaced almost all of the anti-science zealots with real experts. We then submitted a ton of written and in person testimony backed by the science.

There was a contingent who were extremely insistent that we not engage at all; that that would have endorsed the process and given the initial panels' make-up, the instructions to the panel on permitted process and all of the institutions' (including IoM) anti-science in ME, we could not possibly effect the outcome and it would be much worse for us if we participated bc it would have endorsed the process. But, they were dead wrong.

There were flaws in both reports, but it went from being surely an unmitigated, collosal disaster (if we hadn't intervened), to a huge relative success!!

Why do I say "huge relative success"? An nonsensical oxymoron, right? Well, what I mean is that it was a relative success- there were some significant problems with the resulting documents. BUT, they were mostly accurate and science-based. And that relative success was huge in that these documents were going to have an overshadowing impact no matter how they came out. So that relative success had a huge positive impact bc the state of the knowledge of most doctors were so bad that replacing their anti-science "knowledge" with mostly accurate, science-based knowledge was a huge step forward.

All this took a very big toll on my health, but it was worth it. You and we all now face a similar situation with the NICE panel. Yes, the anti-science is more entrenched in the UK, but we are a stronger and more united community now AND we have more bona fide science and authoritative science-based reports to fight with. We have to fight this with all we have! There is NO other option!
 
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Learner1

Learner1

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justinreilly said:
We wrote blogs, contacted media, contacted politicians who then wrote to HHS and IoM. 30 of our clinical and research experts signed a letter protesting the report process and urging that CCC be adopted as the official CDC definition. IoM and HHS replaced almost all of the anti-science zealots with real experts. We then submitted a ton of written and in person testimony backed by the science.
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Hooray! How can this be accomplished in the UK as soon as possible?
 
A

andyguitar

Senior Member
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6,692
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South east England
Well hats off to @justinreilly and his pals for their achievements. Getting the NICE panel changed is, I am sorry to say, going to be very difficult. It is designed to be independant of the UK GOV -sort of- so there maybe procedural reasons why, once chosen, the panel cannot be changed. We will have to see how the ME friendly MPs get on in parliament. But even if the panel cannot be changed all is not lost. Yet.
 
J

Jackdaw

Senior Member
Messages
127
Location
UK
And me!

justinreilly said:
All this took a very big toll on my health, but it was worth it.
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@justinreilly I didn’t know about all those efforts and the change they made. A big thank you to you and others because even though I am UK based I have experienced the positive effects of those documents. In any dealings with doctors my first question is ‘Have you read the IOM’s report on ME?’. Of course they haven’t but I am no longer a person spouting stuff, I am referencing a document by a regarded establishment. And they are on the back foot. But to have just decent NICE guidelines, what a positive change that would instigate.
 
Nielk

Nielk

Senior Member
Messages
6,970
justinreilly said:
I absolutely agree 110% with Jackdaw! This is a lot like the Institute of Medicine and HHS panels that HHS sprung on us to try to get their anti-science propaganda enshrined even further. We realized this was an absolute disaster if this went ahead as they were staging it. They had panels that consisted entirely of ME anti-science charlatans rounded out with doctors who had no knowledge of ME whatsoever and were bound to only look at the "Evidence Based Science," ie the BS anti-science. It would have set us back a decade or decades. We had no choice to fight with whatever we could muster.

We wrote in to and called to IoM and HHS to get the processes cancelled, or failing that, to change the panel. We wrote blogs, contacted media, contacted politicians who then wrote to HHS and IoM. 30 of our clinical and research experts signed a letter protesting the report process and urging that CCC be adopted as the official CDC definition. IoM and HHS replaced almost all of the anti-science zealots with real experts. We then submitted a ton of written and in person testimony backed by the science.
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In actuality, The panel that was originally introduced by the IOM is the exact panel they went ahead with.

The suggested panelists from Spotila blog: http://www.occupycfs.com/2013/12/03...Pb-5RumKm0tyHnUDa1_3G6w1WTOF8IymdG0mRy_0f0SuY

ME/CFS Experts* (7 of 15)

  • Dr. Lucinda Bateman
  • Dr. Lily Chu
  • Dr. Betsy Keller
  • Dr. Nancy Klimas
  • Dr. Martin Lerner
  • Dr. Benjamin Natelson
  • Dr. Peter Rowe
Non-Experts (8 of 15)

  • Dr. Ellen Wright Clayton
  • Dr. Margarita Allegria
  • Dr. Charles Cleeland
  • Dr. Ronald Davis
  • Dr. Betty Diamond
  • Dr. Theodore Ganiats
  • Dr. Cynthia Mulrow
  • Dr. Michael Shelanski

and the actual panel that served as listed on the IOM site - http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx


Committee Members
  • Ellen Clayton, Chair
View Full Committee Roster

  • Margarita Alegria
  • Lucinda Bateman
  • Lily Chu
  • Charles Cleeland
  • Ronald Davis
  • Betty Diamond, M.D.
  • Theodore Ganiats
  • Betsy Keller
  • Nancy Klimas
  • A. Martin Lerner
  • Cynthia Mulrow
  • Benjamin Natelson
  • Peter Rowe
  • Michael Shelanski
 
J

Jackdaw

Senior Member
Messages
127
Location
UK
I’m hearing (on Facebook and through the ME Association) that Dr William Weir has been invited to be a full member of the committee. Anyone know more? The last update by NICE was 1/11.

And Dr Charles Shepherd says he was invited to join but turned it down as he would of had to curtail his campaigning work. He is going to be a co-opted member, involved in discussions but no voting rights. I would rather have had him voting but it’s his call.
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Moof said:
The one thing that cheers me up is the research coming out of the US, Norway, Australia and other countries. As soon as we have a diagnostic test, some of this crap will have to stop. I almost feel like ignoring NICE and letting them make fools of themselves! The UK seems particularly adept at carrying through catastrophic decisions, even though they know how damaging they are and how much every other country is laughing and shaking their heads...
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No.. what comes out of UK ends up affecting the rest of the world so do not think they are not harmful esp if the UK spins things and says whatever it is doing is working well. (something that can happen no matter how badly things are going0

And.. there is no reason why as they have done for some other diseases ,why we could not have diagnostic testing now and this has been the case for a long time now. Many abnormalities are known in ME and there is nothing stopping them saying one has to have a certain number of these abnormalities for a diagnoses to be made. They do this in some other illnesses.
 
DoggerFisher

DoggerFisher

Senior Member
Messages
152
Um so I wrote to NICE and got a not very nice reply, a bit shirty. Since then I have asked two more questions and am still waiting for a response to either.... I think they might have got quite a few emails.....
 
Deepwater

Deepwater

Senior Member
Messages
208
DoggerFisher said:
Um so I wrote to NICE and got a not very nice reply, a bit shirty. Since then I have asked two more questions and am still waiting for a response to either.... I think they might have got quite a few emails.....
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Firstly sorry everybody if I keep disappearing. I am up and down lately, I'm afraid, and have other things pressing when I am able for anything.
Yes, I too wrote to NICE about the make up of the committee and got the standard reply from their Communications Manager last week, to which I finally managed to write a response this morning.
The NICE response to our legitimate concerns is in my view wholly unacceptable as it simply states there is nothing wrong with the make up of the committee, writes us all off as simply people with strong views and 'perceptions', calls ME/CFS a 'condition' and tells us all to let the committee get on with its work. It could have been written by one of the BPS mandarins themselves, except they'd have been a lot cleverer and lulled us into a false sense of security.
Anyhow, I'm not sure if my response was well advised, but it is at least literate, contains no bad language and has made me feel better.
 
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