Petition: Opposing MEGA

Esther12

Senior Member
Messages
13,774
An alternative model for understanding the PACE issue. ~ https://justpaste.it/zyqv #pwme

I'm not really bothered by the models underpinning PACE: I care about the poor quality of the work, the spinning of results and the smearing of critics. It could be that my concerns are unusual (or not), but the different perspectives described there really have nothing to do with my concerns about PACE.
 

barbc56

Senior Member
Messages
3,657
I'm not really bothered by the models underpinning PACE: I care about the poor quality of the work, the spinning of results and the smearing of critics. It could be that my concerns are unusual (or not), but the different perspectives described there really have nothing to do with my concerns about PACE.

I believe @batteredoldbook makes an important point. So do you.

Some patients generalize their concerns about PACE as meaning the other side is simply evil or have bad intentions and getting sidetracked by focusing on that. What happens is that we lose sight of analyzing the study and the way it's been spinned.

I am certainly not denying that harm has come about because of PACE nor that there are valid concerns about MEGA. But I also believe that emphasizing all these negative impacts over the science, at least in this situation, is hindering advocacy.

The other side is also doing the same thing by focusing on the side issues such as patients are vexatious instead of dealing with the real issues.

This actually says it better than I do.

This is simply my opinion. I'm not trying to persuade others to believe the same as I do. I'm just putting it out there as food for thought.
 
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Valentijn

Senior Member
Messages
15,786
I just dont know how people can be so convinced by such extremely poor science. Well it's not even science is it, it's not worthy of the name. It beggars belief.
The biopsychosocial approach to ME is philosophical, not scientific. It cannot be disproven - even if a biological cause is shown, they can always pontificate upon how thoughts and actions are the cause behind the biology, or working in tandem with the biology.

Accordingly, their "research" is simply an exercise in applied philosophy. It does not enter the realm of science, despite their insistence that it be treated as scientific evidence.
 

slysaint

Senior Member
Messages
2,125

slysaint

Senior Member
Messages
2,125
Another comment on the MEGA petition worthy of bumping up IMO
"
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

currently with 6 'likes'

EDIT: Also this one
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?


Any chance of getting a comment up there or somehow letting people who have signed the MEGA petition how they can unsign? (@AndyPR posted instructions on one of the other MEGA threads)......it would be great to see the numbers on the MEGA petition going down:thumbdown:
 
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Jo Best

Senior Member
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1,032

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JohnCB

Immoderate
Messages
351
Location
England
Wow, OMEGA got several hundred signatures from yesterdays events. I'm pretty sure yesterday it had about 1700. Am I remembering the wrong number?

I think your figure may have been right earlier in the day. I did look in the evening and I think I recall seeing 1900. I have just looked and saw 2127. It certainly has had a boost. Just a couple of days ago I was thinking it had nearly reached a plateau at 1500ish. Someone has flicked the turbo on. It could well be Ms Creepy and her online torture programme.

Edit to add: I see the original Support Mega petition is now at at 2545. It has moved very little over recent days. Recently it was still about 1000 ahead of the OMEGA petition but the gap is rapidly disappearing.

It would be interesting if OMEGA actually gets a higher vote than MEGA.
 
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AndyPR

Senior Member
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2,516
Location
Guiding the lifeboats to safer waters.
Why We All Need To Sign The OMEGA Petition from spoonseekerdotcom

The involvement of Prof Crawley, of course, has been one of the main reasons why patients have been uneasy about MEGA right from its first announcement. Yesterday’s publicity about FITNET, Crawley’s upcoming online CBT study, has come as a timely reminder of why that is.

Yesterday’s reports were brimming over with misinformation. Crawley cited a study in Holland in which online CBT had been successful over six months but failed to mention that at long term follow-up it had fared no better than ‘standard care’. She also announced that 1 in 50 children were affected by CFS/ME, an inflated figure which comes from her CFS At Age 16 project. The figure is so large because it was based on children and their parents filling out questionnaires about being tired. No account was taken of the presence of other conditions that might have produced fatigue and the children did not see a doctor. There was no mention of PEM. Crawley effectively measured the number of children with generic fatigue – and then called it CFS/ME.

https://spoonseeker.com/2016/11/02/why-we-all-need-to-sign-the-omega-petition/
 

Barry53

Senior Member
Messages
2,391
Location
UK
So as not to clog the MEGA thread I've answered this here:

An alternative model for understanding the PACE issue. ~ https://justpaste.it/zyqv #pwme

Best wishes.

@batteredoldbook

https://twitter.com/batteredoldbook
https://www.facebook.com/james.david.chapman

Your analogy is quite good. It shows what I believe is flawed and fraud.

EDIT: Quoting original source of analogy, in case link gets broken or something.
I give my brother £5. In his absence I go into his room and place the money onto his desk. My brother, however, is a liar. He comes to me. What lies could he choose to tell?

He could lie about unrelated things and entirely ignore my gift.

Alternatively my brother could claim not to have received my gift and in response, I might choose to re-make it. This would be to his benefit for he would receive twice the amount I intended.

But instead my brother comes to me irate. He tells me that I stole £5 from him. If I am bullied into agreement I may end up paying the original gift, another £5 to re-make it and a further £5 to make up for the money I apparently stole.

After a number of similar instances I start to dispute his version of events and we argue. My brother tells me he has an old film camera above his desk. It takes a picture every couple of seconds: We have a means to prove who is lying and who is telling the truth.

I am content, for I know I am telling the truth and I know my brother's story will soon be exposed as either flawed or fraud.

I hold the strip of film up to the light. The images run side to side from left to right. In the first you clearly can see my hand, holding a £5 pound note. In the next I am putting the money onto his desk and in the final image I withdraw, as I should, empty-handed.

"There! Do you see?!"

But slowly the true horror of the situation reveals itself.

From his side of the filmstrip, from his left to his right, my hand in the first frame is seen to be empty, then in the next it is seen to be taking the £5 note and in the final frame it makes off with it: Bold as brass!

The order of events in time has changed. From his side of the filmstrip, my gift looks like a theft.

Neither of us can use this filmstrip to prove to you the reader, that we are the brother who tells the truth.

The problem with you and your brother's situation is that no open peer review is undertaken. If it had, then someone sufficiently knowledgeable would point out that film has an emulsion side, and writing on it, so in fact there is no ambiguity what sequence the shots were taken in. Even more expert, forensic analysis might be able to find further evidence, if only the data were available for analysis.

Up to this point, both you and your brother are simply victims of naivety. Suppose however, your brother knows about film emulsion and the writing on it, and is fully aware that he is deceiving and manipulating you. You in your turn sense something must be going on here (you, after all, know what the truth is). So you ask for the film, so someone more expert than you can peer review it for you. But your brother fights that option tooth and nail, knowing it would be his undoing.

During all this your brother has motivated (choreographed if you like) others to treat you with suspicion, and to try and 'educate' you into being more honest. It has cost you dear.

Eventually, you, with the help of others, manage to get the film, and your brother's shenanigans are exposed. He nonetheless still insists his version of events is right. Public opinion still remains 'stuck' on his side.

I believe this is where we are with PACE.

I appreciate, and respect, you have your perception of PACE, but I cannot agree with it.
 
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A.B.

Senior Member
Messages
3,780
@batteredoldbook

The very same simple reversal of the direction of cause and effect occurs across UK medical and patient perspectives on issues such as fear-avoidance; requirement for social care; sleep disturbance, and social withdrawal. In each, patients see the negative as an effect of their illness, while UK medicine tends to see it as a cause.

The problem is that there are established scientific norms on how to do research. The BPS faction continuously violates these norms. They appear to believe that they are correctly doing science, but they are not.

The larger problem seems to be that this entire (UK?) branch of psychology and psychiatry is founded on bad scientific methodology. The problem appears to be too big for insiders to even admit its existence. Acknowleding that the BPS research into CFS suffers from systemic methodological flaws would call into question all the other research that uses similar methodology. This would be a career suicide. They will never do this!

Fortunately there is increasing awareness that a lot of research is unreliable and probably worthless, so there is hope that the situation will improve. Meanwhile we patients have no other choice than to continue fighting to make research work in our favor.
 
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eafw

Senior Member
Messages
936
Location
UK
I don't know if this has been mentioned, but the MEGA petition has been closed. Was it intended to be so short lived?

"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 ?
 

charles shepherd

Senior Member
Messages
2,239
"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 ?

As noted previously, I am not part of the MEGA planning group

But my understanding is that the group have listened to the comments about improving the accessibility and presentation of the material being published - which is why a new site is being organised.

I think the system will also be changed so that people can receive regular updates without indicating that they support the -omic research that is being proposed.
 

batteredoldbook

Senior Member
Messages
147
Confidence in MEGA so low, some reluctant even to believe the reason given for the closure of their petition. So far, 2,200 people haven't seen the need to wait and hear the team out and have signed up in opposition.
This is a real problem.
The MEGA study is entering negative-credibility. M.E patients should recognise this state for it's where many of us have found ourselves while speaking to physicians: It's a state of being given the disbenefit of the doubt. It's a state where others have stopped trusting and have started disbelieving our words.
I think pace is a wound through which British medicine's credibility is gushing.
The wound needs a dressing.
 
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