Petition: Opposing MEGA

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batteredoldbook

Senior Member
Messages
147
Dx Revision Watch said:
Given what Coyne did to me, to Angela Kennedy, to Jeannette Burmeister, to Sally Burch, to Wildcat, to Jay Spero, to David James Chapman and to others;
given Coyne's defense of Walitt and Walitt's involvement in the NIH study;
given Coyne's promotion of Shorter as "expert" and his promotion of Shorter's blog and Shorter's books, including From Paralysis to Fatigue;
given Coyne's seeking to scapegoat "deviant patients" for his decision to promote and defend Shorter - that Tweet has to qualify for Chutzpah of the Year Award.
Click to expand...

I think the M.E community should defend people & carers of people with M.E. from abuse. I think the community lost big style this year. I think it was tempted and blinded by position and power. I think it forgot the true strengths that the M.E community has by the bucket load. I think it disrespected itself and allowed itself to be disrespected.
I think it is much more difficult to advocate for M.E now that abuse is accepted. I think it muddies the clear blue water between our generally very good behaviour and medicine's outrageously awful behaviour.
 
Binkie4

Binkie4

Senior Member
Messages
644
@slysaint- the link to become a stakeholder is useful. Am presuming that PR is not a stakeholder. And maybe the usual organisations do not represent our views.
 
Kati

Kati

Patient in training
Messages
5,497
Dx Revision Watch said:
Given what Coyne did to me, to Angela Kennedy, to Jeannette Burmeister, to Sally Burch, to Wildcat, to Jay Spero, to James David Chapman and to others;

given Coyne's defense of Walitt and Walitt's involvement in the NIH study;

given Coyne's promotion of Shorter as "expert" and his promotion of Shorter's blog and Shorter's books, including From Paralysis to Fatigue;

given Coyne's seeking to scapegoat "deviant patients" for his decision to promote and defend Shorter - that Tweet has to qualify for Chutzpah of the Year Award.
Click to expand...

Look, I am a sick person. My only goal here is to get out of this nightmare. If there are outside people willing to help, I am gladly taking this help. It remains that JC has helped the community in many ways. He is possibly not a perfect person, but nonetheless, he has done great services.

I will not comment further and I have hope we all can stay on topic here because fighting MEGA/psych lobby is what matters.
 
Wildcat

Wildcat

Messages
1,446
.

We don't need help from "outside people" who go to the lengths that Coyne did in vilifying/defaming/bullying numerous patient/carer advocates in order to defend the NIH researcher Walitt.

Coyne attempted to silence a number of experienced and established UK and US ME activists on the subject of Walitt's involvement in an important NIH ME study.

Walitt's liason's with an extreme ME psychosocial constructor (Shorter) is only the latest example of psychosocial shennanigans at the NIH.

But those patient/carer advocates who warned early on about the problems with Wallit's involvement with NIH ME research, they were the people who were specifically targetted by Coyne for personal and professional defamation and attempted bullying.



~~~~~~~~~~~~~~~~~~



'Promises, Promises: Thirty Years of NIH Broken Promises'

November 14, 2016 / Gabby Klein

"We are keenly aware and have spoken out about the fact that NIH researchers Drs. Walitt, Gill and Saligan, share Shorter’s beliefs that ME is a somatoform disorder. Dr. Walitt has repeatedly quoted and referenced Dr. Shorter in his works and was the one who introduced Shorter at the lecture at NIH."

https://relatingtome.net/2016/11/14/promises-promises-thirty-years-of-nih-broken-promises/

.


.
 
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Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
Location
UK
slysaint said:
why on the website when you go here: http://www.forward-me.org.uk/Submissions.htm
and then click on the:


does it open a tab entitled "Schizophrenia Guideline"?
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In the document Properties for this PDF, it displays "Schizophrenia Guideline" and author "EBanks"

The author of this pro former submission document provided by NICE (which was created in October 2013) may have used an earlier pro forma document as a template and it has picked up the title (or the first few words) from that earlier document.
 
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Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
Location
UK
Please note that the NICE CG53 submission on the Forward ME site is a document from 2013.

From the current NICE CG53 pages:

https://www.nice.org.uk/guidance/cg53

(...)

Is this guideline up to date?

In 2015 we were told about 3 US reports that indicated there are likely to be changes in diagnostic criteria that could have an impact on the guideline recommendations. We decided to start a check of whether the guideline needs updating, and plan to publish our decision in summer 2017. We have since been made aware of new information about the 2011 PACE trial, and we will also consider that in the check. Register as a stakeholder to be informed about the decision.

Register as a stakeholder

https://www.nice.org.uk/get-involved/stakeholder-registration

~~~~~~~~~~~~~~~~

Note also, that since Forward ME submitted that document, the membership has changed.

The submission listed:

Countess of Mar, Chairman Forward-ME on behalf of:

Tanya Harrison, BRAME
Janice Kent, ReMEmber
Charles Shepherd, ME Association
Sonya Chowdhury, Action for ME
Jane Colby, Tymes Trust
Sue Waddell, ME Research UK
Hannah Clifton, ME Trust
Mary-Jane Willows, Association for Young People with ME
Anne Faulkner, Chronic Fatigue Research Foundation
Arlene Wilkie, Neurological Alliance.

The membership is now:

BRAME
ReMEmber
ME Association
Action for ME
Tymes Trust
ME Research UK
ME Trust
Neurological Alliance

(The Chronic Fatigue Research Foundation closed and AYME are no longer members of Forward ME.)
 
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B

batteredoldbook

Senior Member
Messages
147
Re: Professor Coyne

I'm a pwme. It is not okay to threaten or be abusive towards me. That so many pwme think it's worth allowing me & others to suffer for their benefit is very distressing indeed.

Re: MEGA

Again, the issue here boils down to respect. I think pwme deserve much better science than Pace delivered and we deserve the respect of straight responses to the issues we raise with researchers, with medicine, the CMRC and with the M.E charities. I consider Prof Holgate's recent response to 200 pwme highly unsatisfactory in regard to the latter.

@batteredoldbook
 
W

worldbackwards

Senior Member
Messages
2,051
I don't really see what James Coyne is good for, tbh. He insults us, he insults everybody else - where are the friends he was supposed to make us? Where is the extraordinary influence he was supposed to wield over all those people who he…oh, wait a minute, he insulted them. He's a joke and a sideshow, hardly worth discussing.
 
JoanDublin

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
B

batteredoldbook

Senior Member
Messages
147
worldbackwards said:
I don't really see what James Coyne is good for, tbh. He insults us, he insults everybody else - where are the friends he was supposed to make us? Where is the extraordinary influence he was supposed to wield over all those people who he…oh, wait a minute, he insulted them. He's a joke and a sideshow, hardly worth discussing.
Click to expand...

Professor Coyne made me think less of pwme. That's no mean feat as I have such huge respect for everyone I've met online.
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
Location
UK
ME Association report

http://www.meassociation.org.uk/201...treatment-strategy-and-direction-of-research/

Parliamentary ME/CFS Questions | Luton North MP piles pressure on government over PACE, NICE, treatment strategy and direction of research | 25 November 2016

In some of the fiercest parliamentary questioning about ME/CFS ever, Labour MP Kelvin Hopkins (Luton North) has tabled a stream of questions about the PACE Trial, the National Institute of Health and Care Excellence guidance, treatment strategy and the direction of research...

Read on
 
Binkie4

Binkie4

Senior Member
Messages
644
@Dx Revision Watch- not sure that MEAssociation report above is fully up to date. I think two of the questions were referred back to QMUL. So it seems they will be investigating themselves.......
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
Location
UK
Binkie4 said:
http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questions-answers/?page=1&max=20&questiontype=AllQuestions&house=commons,lords&member=2&keywords=Chronic,Fatigue,Syndrome

Hope this will bring it up.
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Thanks Binkie4, but that link doesn't appear to display this response - if this is the one that you meant is missing from MEA report:

http://www.parliament.uk/business/p...ts/written-question/Commons/2016-11-22/54266/

http://www.parliament.uk/business/p...ts/written-question/Commons/2016-11-22/54269/

[Written Answers]

Kelvin Hopkins

To ask the Secretary of State for Business, Energy and Industrial
Strategy, if he will prevent the PACE trial researchers from being given
further public research funding until an inquiry into possible
fraudulent activity into the PACE trial has been conducted. [54266]

To ask the Secretary of State for Business, Energy and Industrial
Strategy, if he will request that the Medical Research Council conducts
an inquiry into the management of the PACE trial to ascertain whether
any fraudulent activity has occurred. [54269]


Joseph Johnson

Queen Mary University of London, as the research organisation which held
the award, is responsible for the management of the study, including the
investigation of any concerns relating to research conduct and research
integrity.

Whilst the Medical Research Council (MRC) was one of the funders of the
PACE trial, the responsibility for the management of the trial rested
with the host research institution, Queen Mary University of London
(QMUL). This responsibility included oversight of the trial and the
investigation of any well-founded allegations of misconduct that are
brought to its attention. As part of this oversight, in accordance with
MRC guidance on best practice, a trial steering committee was set up and
supported by various sub-groups, including a data monitoring committee.
The MRC was an observer on the trial steering committee.

Anyone wishing to raise concerns to over the conduct of individual
researchers or research programmes is advised to contact QMUL in the
first instance to allow the University to investigate appropriately. It
would be inappropriate for BEIS to intervene in such investigations or
to impose sanctions against researchers.

--------
(c) 2016 Parliamentary copyright
 
Binkie4

Binkie4

Senior Member
Messages
644
@Dx Revision Watch
Yes those were the answers that concerned me. They're available on the other link if you press A under the question. There was a holding answer but then a final answer. Would be interested to know if anyone has challenged QMUL/ is going to challenge QMUL.
 
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