Petition: Opposing MEGA

Snowdrop

Snowdrop

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Sean said:
Further, I though the whole point of the MEGA project was an independent objective assessment of the biological aspects of the disease, to start redressing the gross imbalance left from the unrelenting exploitative psychologising we have been subject to for the last three decades.

Maybe I didn't pay enough attention to the fine print.
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Yes, and it's hard to square that supposed commitment with the amount of funding allocated to do the kind of testing that would require. Seems a bit off.

Now 2,573 signatures.
 
Jo Best

Jo Best

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"Extracts from Medscape Medical News: “Biomarker Research Advances in ‘Chronic Fatigue Syndrome’ ” by Miriam Tucker, 8th November 2016
COMMENT BY MARGARET WILLIAMS 9TH NOVEMBER 2016"
http://www.investinme.org/Article 501-biomarker-research-advances.shtml

This contrasts sharply with the long-held view of the UK psychosocial school: the CMO’s Report of 2002 contained an annexe written on 2nd December 2000 by Professor Anthony Pinching, a former Principal Medical Advisor to Action for ME (Annexe 4: General concepts and philosophy of disease) on the important issue of sub-groups: “On present evidence, this question (of sub-groups) may be considered a matter of semantics and personal philosophy…” and the PACE Investigators stated in their Trial Identifier: “We chose these broad criteria in older to enhance generalisabiiity and recruitment”. This failure to select as homogenous a cohort as possible has held back medical science in the UK for a generation.
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Attempting to educate the UK medical profession, the DWP and benefits decision-makers, the media and local authorities about ME/CFS has proved impossible for the last 30 years.

Since the psychosocial model is demonstrably wrong, to continue treating ME/CFS as a behavioural disorder is both unethical and harmful, and is wasteful of tax payers’ money.

Thirty years of behavioural research and interventions have yielded a null result.

The stranglehold of the psychosocial school in the UK over this disorder must be broken so that actual progress can be made.

How can so much evidence be ignored by so many people for so long?
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A

AndyPR

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11 Nov 2016 — The Irish M.E. Trust is the latest patient organisation to join us in Opposing MEGA. In their newsletter this week -

"The Irish ME Trust has no hesitation in supporting the objection to MEGA not only because of who it involves but also because they will be using the NHS clinics to get research participants using a broad fatigue marker rather than the CCC or ICC. In addition they will not be recruiting any severe ME people because these people do not present to the CFS clinics in the UK, many having been either harmed by them or dismissed from them because they have nothing to offer. The concern is here that the research pool will once again be so diluted that any findings will at best be worthless or at worst will 'prove' the case for ME being a psychological illness with no consistent biomarkers".

Sign our petition Opposing MEGA here -
change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
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https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/18429341
 
Jo Best

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A

AndyPR

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Jo Best said:
More dirty dealings by the CMRC - http://investinme.org/IIMER-Statement-1611-02.shtml
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Wow, I'd say that is unbelievable but, given past history, it shouldn't be surprising really. That's pretty much solidified my opinion that the CMRC isn't fit for it's stated purpose - I assume though that for keeping the status quo for the 'right' people it's doing it's job perfectly.

@charles shepherd , does the ME Association have any comment on this communication from the chair of the CMRC that seems to want to influence the actions of an independent charity? Was the ME Association aware of this communication? I'd hope not but then that raises it's own questions surely?
 
trishrhymes

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I find this disturbing. Behind the scenes attempts to influence or criticise the actions of another charity by Holgate is yet another reason I still oppose MEGA. Add that to his unquestioning public praise of FITNET as 'high quality research'. If that's what he calls scientific and ethical behaviour I want nothing to do with him.
 
Snowdrop

Snowdrop

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I think it's good that Omega has support from IiME but their support isn't why I signed the petition.
Now PwME can't think for themselves apparently. We just follow the leader. :rolleyes:

tbh lately I think the actions of the BPS ME deniers have only served to shoot themselves in the foot.
I include Wallitt in that statement-- while the Shorter talk should never have happened I think it will only serve to isolate Wallitt further from having any real clout with the real scientists checking on his work.

Meanwhile back in the UK I sense increasing desperation. Not to say that BPS is dead (they are too well protected--and thus their hubris) but they are starting to look quite silly.
 
Jo Best

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Just checking the petition updated titled - 2,000 Supporters and Rising as MEGA members in mainstream media -
https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/18346814

There was a surge of support for our Opposing MEGA petition in response to mainstream media coverage on 1st November of a trial called FITNET (behavioural therapy delivered by internet for children/teens with the neurological disease ME/CFS) run by MEGA researcher and Vice-Chair of the CFS/ME Research Collaborative (CMRC) Professor Esther Crawley.

The news included comments of support of FITNET by MEGA members Professor Stephen Holgate (Chair of the CMRC) and Mary Jane Willows (CEO of AYME, a charity for young people with ME to which Esther Crawley is medical advisor).

Esther Crawley is leading the FITNET trial to "see if online consultations work and are cost-effective for the health service". Professor Stephen Holgate said of FITNET 'Patients deserve high quality research like this' and Mary Jane Willows describes FITNET as "hugely important".

They all failed to mention that the Dutch study upon which FITNET is based showed null effect of the intervention at long-term follow-up.

Similarly, the PACE trial upon which Esther Crawley's MAGENTA trial is based, showed null effect at long-term follow-up.

The following quote is a classic example of what our petition explains of how promises of biomedical studies can be misleading in the context of the bio-psycho-social (BPS) model -

“Crawley believes that CFS is a biological illness and that online CBT can be used to alter the young person’s biology.”
The Times, 2nd November 2016.

On the evening of 2nd November, MEGA closed their petition at 2,546 signatures stating that they will be moving to a website in the next week or two so that they can "better manage content and improve access to information for those that don't wish to sign up to support this study".

It has been suggested that MEGA closed their petition because of the high level of critical comments posted to it, the fact that this counter-petition Opposing MEGA (OMEGA) was fast gaining on it with almost the same number of signatures in half the amount of time, and the fact that increasing numbers of people, on reflection, wished to ‘unsign’ their name on the MEGA petition.

The decision by MEGA to use a public petition site as a vehicle to garner support has raised a lot more awareness of the insidious bio-psycho-social movement than if they had merely created a website and submitted their grant application/s to the 'mainstream research funders' to whom their petition was addressed.

MEGA has not gone away, merely moving to a new website, and will apply for funding. They state that they plan to post regular updates and blogs and they say they will ensure there is the facility to ask questions and engage with the MEGA team.

However, many people 'unsigned' the MEGA petition or signed the Opposing MEGA petition because of unsatisfactory responses to correspondence with MEGA, with questions unanswered.

MEGA have completely ignored all of the comments regarding the involvement of those people who were architects of PACE and who have caused so much damage to people with ME over the years, who have blocked good quality biological research for decades and who continue to this day to push their harmful pseudoscience with projects like MAGENTA and FITNET.

With such people running MEGA, we have no confidence at all in MEGA or their research proposals.

We have seen the damage they have done this week alone with the media coverage they received for the FITNET trial which hasn't even begun but was being lauded as a 'cure' for people with ME.

This Opposing MEGA petition will remain open so that patients can register their objection to any more involvement of these people in ME research and to reject their calls for more funding.

We thank everyone reading our petition, and for the excellent points being made in carefully considered comments, and everyone supporting by blogging or posting on social media.

The latest organisation to pledge their support is MEadvocacy.org in USA. They wrote -

"The MEadvocacy.org Advisory Committee has reviewed this OMEGA petition asking for signatures to reject the proposal from the ME/CFS Epidemiology and Genomics Alliance (MEGA) for a study that is being promoted to patients in the United Kingdom.

ME is a global epidemic, therefore policies and research that are promoted in Europe often have a dramatic impact on the USA policies for addressing ME.

This OMEGA petition fits within MEadvocacy’s mission statement, so we have decided to promote this petition.

Please join us in signing the petition and share widely.

Petition link: https://t.co/nx1J9OHPJU
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Jo Best

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JoanDublin

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