Petition: Opposing MEGA

[Barry53]

I note that you don't consider the possibility of the problematic people being removed and the project going ahead with full patient support, which probably tells us something about who's really in charge.

My feeling is that these people are very powerful, influential and manipulative. I have sometimes thought that, considering psychiatrists have so much understanding of how the mind works, and of strategies that can influence the way people think and behave, isn't it a good thing they also have the integrity and morality to never abuse the power this gives them. And that a story line for a psychological thriller might be if such a person with those skills, lacked that crucial morality and integrity.

And now I'm thinking it may not be fiction.

 

[Barry53]

How about a statement from the CMRC on the PACE trial analysis as per the original protocol ?
If Holgate and the CMRC genuinely want to help people with ME they should have no problem with this. Indeed they should be first out the blocks.

The problem for them is probably political as much as anything. If PACE is formally acknowledged for what it really is, and the impact it has really had, then the political ramifications are major. Damages, sickness benefits, etc. I would be very surprised if there are not other strings being pulled behind the scenes.

 

[Jonathan Edwards]

reading all the comments on PR it's difficult to find anyone who wants to see the MEGA study proceed, even if changes to the personnel were made. I don't sense any real enthusiasm on PR for a big data -omics study!

Charles

I think you are reading things wrong Charles. I suspect most people here want a MEGA type study. And amongst the stalwart members that make PR what it is, some very considerable enthusiasm has been expressed. Simon, for instance, has done everything he can to defend the project, and all credit to him for that. Everyone knows that patients want studies like this. What I think is important is that we have this lively discussion about the best way to do it. Moreover, with Chris Ponting providing a line of communication there is a feeling that real dialogue has been established.

 

[Yogi]

I have posted this on the main MEGA thread but it is very relevant here so have placed it here also and that so everyone is aware of this.

http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-17#post-777861

http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-17#post-773642

I am very ill like many people here and would have hoped that this would not be necessary.

I have been deeply concerned and disturbed about the MEA and it encouraging others to support MEGA and sign the petition.

I asked 3 times on October 5th and October 10th the same question when @@charles shepherd was on the forum but was ignored each and every time.

http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-16#post-771945

http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-13#post-771697


I asked the last time on 10 October and had given him another two weeks to respond but no response had been received by 13 October. He has said there should be reasonable and constructive criticism and communication. However the communication has been very poor.

Now he may feel that he does not and need not respond to me. That is the MEAs and his pregorative. However what I find odd to say the least is that the MEA's medical advisor has repeatedly come on to PR to strongly advise and steer us towards supporting MEGA and sign the petition but not question MEGA and advised very strongly not to set up a counter petition but instead send an impotent open letter in the hope that MEGA and CMRC will engage in communication with us.

I have bit my tongue but feel I must speak out especially that the MEA medical advisor had continued to misadvise regarding MEGA and not respond to reasonable questions but instead guide the community to support MEGA and sign the petition prematurely.

So @@charles shepherd I would hope you could respond to my reasonable question of why the original petition is necessary and why it is a good idea given a counter petition is such a bad idea.

I am also concerned about some unfounded statements being made to ensure support MEGA.

I put this out again so everyone can judge for themselves.

I will not hold my breath!

 

[Wildcat]

.
@charles shepherd wrote .... "Stephen Holgate lives in the real world ....."
.

We live in the real world.... we live in the real world of our friends, relations, doctors, sickness benefits assessors believing that we have a "fear of exercise" and would recover if only we would exercise more; they believe that because they read it in the newspapers again and again ... put there by Peter White and his colleagues ...

....and we live in the world of benefits assessors, our GPs, social services, teachers, etc believing that an incredible percentage of the child population of the UK suffer from ME and recover in 6 weeks with advice on sleep! (Edit addition) .. those claims propagated by the Vice Chair of the CMRC!


Those ridiculous claims have been made, and widely publicised by the very doctors who, we understand, Stephen Holgate has involved in the MEGA study .....
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Please do not patronise us any further by trivialising our realistic concerns about the current proposals re MEGA
.

 

[Jonathan Edwards]

The ME patient community does not like the MEGA study because it involves Dr X, or the protocol you have developed is not going to work, then I think it's highly likely that they will quickly depart for other diseases and be very reluctant to take any further interest in getting involved with an ME/CFS research study

Charles, it is perfectly legitimate for a grant giving body to say they do not like a study because it involves a researcher who has shown incompetence and even more so if the protocol is not going to work. That is what grant giving committees are there for. Why should the patient community not express their opinion in the same terms. So far in this business the patient community, guided by a small number of highly intelligent and perspicacious individuals, (including I might add, your good self!) have got things more right than the grant giving bodies and journal editors. For Stephen Holgate to go back to the -omics people and say there is no enthusiasm would be just more of this nonsense that the FOI information officer debunked - that the patients are ungrateful. There comes a point when an honest desire to seek the truth in science transcends playing games. If people insist on playing games that is what should put off the researchers.

 

[Jan]

.
@charles shepherd wrote .... "Stephen Holgate lives in the real world ....."
.

We live in the real world.... we live in the real world of our friends, relations, doctors, sickness benefits assessors believing that we have a "fear of exercise" and would recover if only we would exercise more; they believe that because they read it in the newspapers again and again ... put there by Peter White and his colleagues ... and we live in the world of benefits assessors, our GPs, social services, teachers, etc believing that an incredible percentage of the child population of the UK suffer from ME and recover in 6 weeks with advice on sleep!

Those ridiculous claims have been made, and widely publicised by the very doctors who, we understand, Stephen Holgate has involved in the MEGA study .....
.
Please do not patronise us any further by trivialising realistic concerns about the current proposals re MEGA
.

We also live in the real world where patients are dying and we wonder if we will be next.

 

[AndyPR]

2 The internet discussion on MEA Facebook has been somewhat taken over by a small group of people who are very vocal both here, and elsewhere on the internet, in their very fixed opposition to OMEGA and the campaign to stop the study taking place - even though the protocol (ie design) of a complex piece of research is still being discussed and a patient liason group has not even met

Regarding the petitions - reading all the comments on PR it's difficult to find anyone who wants to see the MEGA study proceed, even if changes to the personnel were made. I don't sense any real enthusiasm on PR for a big data -omics study!

I find these comments to be ironic considering quite recently the MEA Facebook page shared an article about gaslighting and the ME community.

If you took a moment to think about it, it will always be a minority of the patient population who speak up, because the larger portion aren't well enough to do it, or they aren't aware of the issues. I speak up, when I can, not only for myself, but for those people like Whitney Defoe who are bedbound and unable to do anything, for those children who Crawley will be subjecting to GET and whose parents who are afraid to object to those treatments in case trouble is caused with social services.

To be absolutely clear (yet again, as I have posted this before), I desperately want biomedical research on ME to take place but I will fight as hard as I can to deny White, Crawley and any other BPSer any chance to use biomedical research as some kind of Trojan Horse which they are able to ride to further research 'glory'.

 

[A.B.]

I will not accept a compromise between bad and good research. Holgate needs to face the reality that the BPS faction is incompetent and has consistently produced bad research. Bad research projects deserve to die. I would support a project like this if it were well done.

 

[charles shepherd]

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@charles shepherd .... I know you are answering lots of questions here .... but who is on the MEGA Planning Group?

Its pretty difficult to locate the makeup of the various CMRC panels as there is not a dedicated CMRC website ... everything being mediated via AFME, who are not always fully forthcoming with all the details we would like to see.
.
.

I think this is the most recent list of researchers on the planning group

* Genomics – Prof George Davey-Smith (Bristol),
Prof Chris Ponting (Edinburgh),
Prof Colin Smith (Brighton)
* Epigenetics – Prof Caroline Relton (Bristol)
* Proteomics – Mr Tony Bartlett (Somalogic)
* Metabolomics – Dr Rick Dunn (Birmingham)
* Routinely collected data – Prof Andrew Morris (Edinburgh) and Prof David Ford (Swansea)
* Infection – Prof Paul Moss (Birmingham)
* Sleep – Prof Jim Horne (Loughborough)
* Pain – Prof Maria Fitzgerald (UCL)
* Prof Julia Newton (Newcastle)
Children and Adolescents - Dr Esther Crawley (Bristol)

 

[charles shepherd]

Just to be clear - if White and Crawley were removed, I think I'd like MEGA to go ahead (although I'd still like more details before deciding).

Thanks

That is the sort of very clear answer I am trying to elicit from the question - but not always succeeding!

 

[charles shepherd]

Oh, that's really unfair. I think the majority are/would be very enthusiatic about a big data-omics study.

The stumbling block is the BPS influence, and that is where the community is split - 1) whether to go ahead in something of a compromise postion, hope for modifications to the initial proposal along the way and expect the science will prevail, or 2) whether to wash hands of the lot.

I'm in the first camp, slightly reluctant in a way, but recognising that MEGA has potential and want to support the science. That won't stop me (or anyone else) from pointing out the problems that are still there though.

Thanks

As with my last reply - this is the sort of clear answer I am trying to elicit!

But I'm still not convinced that the majority of people on PR want the MEGA study to go ahead if the objections that are being made very clear here on PR were to be resolved

Would it be possible to organise a poll on PR where these options were put to people?

 

[charles shepherd]

I've said it before and i know many others share this view, i would like this study to proceed if the the appropriate changes are made. ( exclude White and Crawley, better patient selection )

Thanks again for the third clear reply

It's only a straw poll but three replies in a row seem to be saying that people would like the study to go ahead if the problems being pointed out were resolved and there is a protocol developed that people are happy with

 

[charles shepherd]

I think you are reading things wrong Charles. I suspect most people here want a MEGA type study. And amongst the stalwart members that make PR what it is, some very considerable enthusiasm has been expressed. Simon, for instance, has done everything he can to defend the project, and all credit to him for that. Everyone knows that patients want studies like this. What I think is important is that we have this lively discussion about the best way to do it. Moreover, with Chris Ponting providing a line of communication there is a feeling that real dialogue has been established.

You may be right!

We have just had three people in a row stating that they may well like the MEGA study to proceed if the problems can be resolved

A poll might be useful here?

 

[charles shepherd]

I think you are reading things wrong Charles. I suspect most people here want a MEGA type study. And amongst the stalwart members that make PR what it is, some very considerable enthusiasm has been expressed. Simon, for instance, has done everything he can to defend the project, and all credit to him for that. Everyone knows that patients want studies like this. What I think is important is that we have this lively discussion about the best way to do it. Moreover, with Chris Ponting providing a line of communication there is a feeling that real dialogue has been established.

Yes, Simon has made some very helpful and constructive comments and I have been discussing the trial with him

 

[Sasha]

Would it be possible to organise a poll on PR where these options were put to people?

Yes, you can create one yourself by starting a new thread. Just scroll down and you'll see the poll option when you do so.

 

[Ritto]

As @BurnA said, I too "would like this study to proceed if the the appropriate changes are made. ( exclude White and Crawley, better patient selection )"

 

[Barry53]

I suspect most people here want a MEGA type study

Spot on. Our worries are not with the type of study, but with the likely professionalism of it, and for good reason.

There comes a point when an honest desire to seek the truth in science transcends playing games. If people insist on playing games that is what should put off the researchers.

It is tragic of course, that there is even a point we have to come to.

 

[Countrygirl]

="charles shepherd, post: 777894, member: 13591"]Thanks

But I'm still not convinced that the majority of people on PR want the MEGA study to go ahead if the objections that are being made very clear here on PR were to be resolved

I, for one, if the objections were resolved, would vote for the project to go ahead. I find it hard to believe anyone wouldn't.

Just how likely is it that our well-founded objections would be respected and acted upon, however?

 

[trishrhymes]

Thanks again for the third clear reply

It's only a straw poll but three replies in a row seem to be saying that people would like the study to go ahead if the problems being pointed out were resolved and there is a protocol developed that people are happy with

I said the same thing about 3 hours ago, but perhaps I said it in too many words to be clear. Lots of us are eager for good quality research.