Petition: Opposing MEGA

Jo Best

Jo Best

Senior Member
Messages
1,032
Just read superb comment on Opposing MEGA petition -
https://www.change.org/p/opposing-m...dence-in-mega-research-for-me-cfs/c/530526551

I have no confidence in MEGA as it currently stands. The track record in the UK regarding the multi-systemic neuro-immune disease ME (or ME/CFS if you will) is worse than abysmal. If the UK truly wants to research this disease and truly help those afflicted with it, then it must have a complete paradigm shift in its view, thinking, and handling of ME.

Very unfortunately, the ill-conceived political construct of CFS was developed in the late 1980's by a group of international scientists meeting at the CDC in the United States. This useless, confounding, and misleading "CFS concept" should be entirely done away with, not just in the UK, but in the rest of the world as well. This political construct was a convenient way to put emphasis on "fatigue" and make the neuro-immune disease ME disappear. This was very convenient for the insurance industry and governmental health services wanting to keep costs down, but it has been disastrous for patients. Putting the emphasis on "fatigue," instead of the entire neuro-immune disease, fed right into the unproven BPS hypothesis put forward by the Wessley School of psychiatrists and psychologists. And their propaganda regarding this disease has spread throughout the rest of the world, affecting how ME patients are viewed and treated by the medical profession and society as a whole. Putting forward a psychological therapy intended to rid patients of their "false illness beliefs that they are truly ill" as a treatment, and even a cure, for a devastating organic disease is, in my view, malpractice. And there is no excuse for it.

Putting blinders on, these psychiatrists and psychologists, and those that have come under their influence, have ignored the many physical abnormalities that have been observed in these patients. They have refused to listen to and learn from other noteworthy international scientists that have been working on this disease. They have ignored the well thought out and thorough definitions of this disease as stated in the Canadian Consensus Criteria and the ME International Criteria. Instead, they have developed the useless "Oxford Criteria," which the health agencies in the United States have said should be retired as they are not reliable and problematic. They have ignored the energy production problems and post-exertional relapse that are part of this disease, and instead have forced patients to ignore what their bodies are telling them and to undergo Graded Exercise Therapy, often resulting in a permanent worsening of the disease and greater disability. They have conducted the PACE trial to substantiate the efficacy of CBT and GET, their favored therapies on which they have built their careers, and on which the NHS has developed its medical treatment policies for these patients. And they have hidden for as long as possible, the real results of the PACE trial that showed these two therapies are not effective. And they have used the Science Media Center to spin and hype up their message.

Patients didn't need the PACE trial to know that CBT and Graded Exercise Therapy are not effective and not warranted. They know it from their own experiences with this disease. When patients tried to address the problems they saw in the PACE trial, they were maligned as a bunch neurotic terrorists out to harm the researchers. When these same PACE researchers and proponents show up on the roster of those involved in the proposed MEGA study, how do you expect to get patient support? Patients are tired of not being listened to, but instead yanked around to further the careers of these people. Has nothing been learned from the PACE fiasco?

The UK has a lot of work to do to clean up its house regarding this disease before it can earn back the trust of patients who have been so badly treated, misled, and abandoned now for decades. I really hope and pray that will happen.
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Binkie4

Binkie4

Senior Member
Messages
644
Couldn't another team of surgeons with a different skill set go back in and stop the flow?


Ref: batteredoldbook analogy
 
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JoanDublin

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
eafw said:
It will be interesting what the new site is like. One other thing occurred to me which is that now they have shut the petition no one can "unsign" ? Those 2500 sigs are locked in.
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I THINK you an still unsign so long as you give them the URL for the petition, even if it's closed. Not 100% sure but would be glad if someone who signed it could try it out? This is the link to unsign

https://help.change.org/s/createrecord/I_want_to_remove_my_signature_off_a_petition?language=en_US
 
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Yogi

Senior Member
Messages
1,132
eafw said:
"2 NOV 2016 — We will be moving to a MEGA website in the next week or two so that we can better manage content and improve access to information for those that don't wish to sign up to support this study but are keen to hear the latest news. We plan to continue posting regular updates and blogs and to ensure there is the facility to ask questions and engage with the MEGA team. We will also be posting information about how you can become part of the patient advisory group soon. Working with the researchers, this group will inform the application and protocol for the study. "

https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18337625

No word as to why the sudden closure of the petition though, they could have it linked on new site ?
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I think they wanted 2500 signatures target and now they have reached it they have closed it.

The top comments are very negative of the MEGA project. I think they will remove all the critical comments and then spin it to claim that patients support MEGA.

I do not trust Sonya Chowdhury and AFME one bit.

We cannot allow them to claim that it is fully supported by patients.

Is there a way to make a backup or copy of all the comments incase they are deleted??
 
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Barry53

Senior Member
Messages
2,391
Location
UK
In case the comments disappear forever from the MEGA petition website, I've put them here for posterity:-
Supporters
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Yogi

Senior Member
Messages
1,132
I have signed but want to withdraw my signature because of the people involved

Elizabeth Hough, Croydon, United Kingdom
1 month ago

13
Report


I am sick and tired of the stupid PACE trials. We need all the research for finding a medical solution. We are really sick!

Maaike le Grand, Netherlands
1 month ago

13
Report


I am signing because anyone who has seen the devastation ME can cause needs biomedical research. I just urge you to take all psychiatrists out of the equation, how can they be involved with the biomedical research of ME especially when they have caused so much harm and been discredited so many times.
The participants should be selected via a thorough diagnosis criteria, otherwise every tom dick and harry can be involved. This will not help patients with ME and so will be a waste of money. Please see the requirement for good science with this disease, we have been ignored and abused for far too long.

Lucy Robinson, Potters Bar, United Kingdom
1 month ago

12
Report


We need this research! CBT and GET don't work!

Michael Dyson, Sparsholt, United Kingdom
1 month ago

9
Report


Unsign

joy birdsey, rochester, United Kingdom
1 month ago

9
Report


As someone in another group pointed out the study doesn't mention post exertional exacerbation of symptoms which is now known to be the core diagnostic feature of ME/CFS.
What is being studied........a vague cohort of fatigue or the neurological disease?
Is the UK following the USA example and abandoning broad and overly inclusive criteria such as the Oxford criteria?

Adrienne Wooding, Gold Coast, QLD
1 month ago

9
Report


I also wish to withdraw my support knowing Peter White is involved, even in an advisory role. The PACE trial was shockingly bad science that has caused severe harm to many very sick people and Dr's that speak out are punished ( Nigel Speight ). I think for anyone to have any confidence in UK medical research community the shocking reality of the PACE trial debacle needs to 1) owned up to 2) widely reported, including in the Lancet. The systemic failure the peer review system needs to explained, and measures put in place to avoid a repeat. Potential conflicts of interest need to be stated right at the beginning of the trial and all participants need to be made aware of this. Those responsible for all the harm caused need to held publicly accountable ( fraud/manslaughter? )People have died as a direct result of being sectioned and forced to undergo treatments based on the deeply flawed and unscientific PACE trial and no one has been held to account).

Iona Fabian, Aston, United Kingdom
1 month ago

8
Report


As someone in another group pointed out the study doesn't mention post exertional exacerbation of symptoms which is now known to be the core diagnostic feature of ME/CFS.
What is being studied........a vague cohort of fatigue or the neurological disease?
Is the UK following the USA example and abandoning broad and overly inclusive criteria such as the Oxford criteria?

Adrienne Wooding, Gold Coast, QLD
1 month ago

8
Report


I'm concerned about the involvement of 'the psychobabble-mongers' but I have had ME for 12 years now and I believe that we need good research projects to succeed so that we can find the answers. Hopefully GOOD will outweigh any bad influences 

Angel S, Blyth, United Kingdom
1 month ago

7
Report


I want answers about this awful physical disease, not more psychobabble

Andy Micklethwaite, Belper, United Kingdom
1 month ago

7
Report


Please take my name off the petition due to the involvement of PACE researchers.

Helen Sander, Kimberley, BC
1 month ago

6
Report


I'd now like to remove my support due to Peter White's involvement. I didn't realise the controversies before I signed.
How do we remove our signatures please?

Claire McDonald, Cwmbran, United Kingdom
1 month ago

6
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A

AndyH

Messages
62
Countrygirl said:
@Wildcat I am also concerned that EC says that her patients' ME is different to the severe forms in the fatigue clinics.
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She quoted on the BBC that those that attend her clinic only attend school two days a week, so only the most severe are getting treatment. She has no idea of what severe is. Quotes have been made from her or her clinic that tube feeding and paralysis are not part of ME and we know that the moderate have been pushed into physic resulting in the child ending up very severe. Crawley and presumably her training of medics is clearly in support of including those with General fatigue as having ME, presumably because she can say she cured them; and in support of avoiding the severe through the use of MUS of FII as a way to give a differential diagnosis, thus ridding her of those bad for her success rate.

Countrygirl said:
@Wildcat
I note there is also another reference to 'patient harassment' and, if I recall correctly (it was 3 am this morning that I read it) Holgate was condoning this further maligning of the patient population.
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Easy to make the point that these are control tactics to undermine patients who want to be heard because Crawley etc. ignore issues that harm patients.

Parents are sick of Crawley using children as 'pawns' in her battle for supremacy.

Countrygirl said:
@WildcatShe really doesn't seem to be studying the same disease.
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Exactly. Even JN says 40% misdiagnosed as having ME. Then on top of that, there are the severe who are cast aside. She has diagnosed using Oxford criteria and now says NICE criteria but clearly has no respect for PEM as can be seen from her study in child absence from school. She'll perhaps be using the 'diagnosis' section in CG53 to warrant precluding PEM.
 
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Molly98

Molly98

Senior Member
Messages
576
Do you think we could come up with a research proposal and perhaps a public petition on treating the BPS promponents and practitioners unhealthy beleifs and cognitions of ME with CBT ?

I think this CBT based therapy would work really well on them to change their cognitions and beliefs about this disease as their beliefs are not just unhealthy and unhelpful but are very out of touch with reality and scientific fact.

I think we should propose a CBT treatment trial and come up with a equivilent programe to match FITSHIT to treat these people, it may not completely cure them but it may go along way to managing their unhelpful beliefs and cognitions and therefore their self distructive behvaiour.

We have a lot of very intellegent well educated people in our community, I reckon we could make a good research proposal between us don't you think?
 
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Yogi

Senior Member
Messages
1,132
https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/18346814

2,000 Supporters and Rising as MEGA members in mainstream media


Opposing MEGA
United Kingdom

3 NOV 2016 — 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.
 
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B

batteredoldbook

Senior Member
Messages
147
batteredoldbook said:
I think pace is a wound through which British medicine's credibility is gushing.
The wound needs a dressing.
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Binkie4 said:
Couldn't another team of surgeons with a different skill set go back in and stop the flow?
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Yes, but any young medics who wanted to cauterize this wound would first have to get past a series of career-ending challenges to high level professors. :(
 
Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
Yogi said:
“Crawley believes that CFS is a biological illness and that online CBT can be used to alter the young person’s biology.”
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A rather important point. Worthy of tweeting/sharing on media. Biology is no roadblock to using the BPS solution.
Even rigorous science will not be enough to dissuade this group and they have the blessings of official policy behind them.

How can this not affect how the data collected from MEGA gets used? For those who still support MEGA this is a Q that needs considering. How certain can we be that biological findings will change the UK ME paradigm?

This can't be said often enough--nobody disputes a biological aetiology. It's about what happens when the person doesn't (refuses in BPS terms) to get well. That's where the story is. Even when people make positive statements saying CBT helped it's inevitably in the context of coping--that is not treatment.

And then there is the issue of What is ME? Well, hard to answer--but we know it's NOT just fatigue. This is why it's particularly important to have severe children with ME. EC doesn't believe in such a thing --but we all know otherwise.
 
Deepwater

Deepwater

Senior Member
Messages
208
“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.

Someone who listened to her interview on BBC radio on Tuesday tells me she agreed that it normally starts with an infection but said she believes that the infection clears up normally and that from then on it is psychological.
(This person, until now very sceptical that ME is real, was very unimpressed with Esther Crawley's responses as being wholly unscientific, so amongst all the damage she did us on Tuesday she succeeded in removing the scales from the eyes of at least one person. Well done, Esther! Ironically, it gave me an opportunity to explain to this person about the false rhetorical devices generally used by the BPS school in place of science, such as constantly moving the goalposts.)
 
slysaint

slysaint

Senior Member
Messages
2,125
helsbells said:
Not sure if left already but a piece about FITNET with the opportunity to comment on a Bristol Uni student piece:

http://epigram.org.uk/lead-article/2016/11/backlash-landmark-university-research-trials
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Liked this:
Jack Foord says:
November 3, 2016 at 4:01 pm
Professor Hanson of Cornell University has developed a test tor M.E. using microbiome metabolytes as a biomarker. The test has had 83% success in distinguishing M.E. diagnosed patients from non-diagnosed (control group.).The test proves M.E, is physiological not psychological, not a cognitive problem .

CBT cannot treat physiological diseases. It is to change a patient’s way of thinking about his/her problem. As for using computers, Dr. David Smith, who has run a NHS clinic for over 25 years, warns: ”You should almost totally avoid using a computer or reading books.”
Furthermore Dr. Smith advises “It is very important that your total mental and total physical energy output is the same every day,” and “If you can’t do it every day, don’t do it at all.”
My understanding, from other sources, is that GET may well cause harm rather than improve matters. It certainly isn’t going to ‘cure’ damaged mitochondria.
 
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