Petition: Opposing MEGA

[batteredoldbook]

I also think the exchange was productive. For Chris Ponting to express a frank view on PACE is important. It would be have been nice if Stephen Holgate had taken the opportunity to do the same in response to my email. Ponting may not want to say more but I suspect he will not be threatened. He seems to have a wide angled view. I personally find twitter absurd but if people know when not to overdo it I grant that it may be a powerful method of communication.

Hello.

Me too, but I confess to feeling frustrated: the convo appears to be over well before the required job is done. Professor Ponting does, I think, have the ability at this early stage to radically reshape the destiny of the MEGA project, something that, yes, too many others are unwilling to do.
The trouble for me, and this is whether I'm talking to medicine, charities, advocates or pwme, is that it's always lovely up to a point. And that point is where muggins here suggests a change might be necessary. People don't like change. Don't trust it. Don't see the need for it. And I think they imagine that when the music stops someone will have removed a few chairs. The problem is that where only a few make changes to their behaviour, M.E hardly changes over-all.

 

[batteredoldbook]

I've asked Prof Ponting on Twitter why the children's arm of MEGA is having pre existing patient advisory groups from FITNET parachuted in? Sincerely hope he will respond to it, though not holding my breath

Patient consultation in MEGA woeful.

 

[docsimsim]

Patient consultation in MEGA woeful.

The adult arm of MEGA is asking people to apply to be on the PAG, deadline is next Monday. I urge anyone here who has profound concerns about MEGA, to apply. The more well informed patients are on the PAG the more chance we have of making our voices heard. Otherwise Afme will parachute in their own complaint patients like they did with PACE. Please don't disengage at this point, be part of PAG and work from within.
Regarding the kids arm, it's not acceptable to import the FITNET PAG into this study. Needs to be stopped

 

[batteredoldbook]

The adult arm of MEGA is asking people to apply to be on the PAG, deadline is next Monday. I urge anyone here who has profound concerns about MEGA, to apply. The more well informed patients are on the PAG the more chance we have of making our voices heard. Otherwise Afme will parachute in their own complaint patients like they did with PACE. Please don't disengage at this point, be part of PAG and work from within.
Regarding the kids arm, it's not acceptable to import the FITNET PAG into this study. Needs to be stopped

Hello there. I'm against patient involvement in the MEGA PAG and have written a bit on it that I'll post below. I didn't want to add here because my feelings are strong, and I want to direct them to the MEGA team, not to you!

 

[Jo Best]

Haven't we been told that Esther Crawley is driving the whole MEGA project (and we know she has the full support of Stephen Holgate) so surely there needs to be a full stop to MEGA rather than a rescue attempt. If MEGA disbands in its current form, the researchers with a keen interest in ME/CFS can approach Invest in ME Research. After all, Stephen Holgate took advice from a member of the CMRC board to approach the IiMER Advisory Board, so they are clearly held in high regard by some members of the CMRC/MEGA in respect to research into this disease.

 

[batteredoldbook]

My feelings on the MEGA Patient Advisory Group.

I understand the closing date for applications for membership of the MEGA Patient Advisory Group has been extended from the outrageous 6th December to the merely highly disrespectful 13 December 2016. Applying such a stopwatch to M.E patients on a multi-million pound research proposal seems very wrong to me.

I feel MEGA is an appalling piece of work and I feel its application for funding should be halted immediately. I find it disrespectful that the "CFS/ME" Research Collaborative could bring to M.E patients such a rushed, opaque, and self-contradictory research proposal. The MEGA team have fundamental disagreements over what makes good science and these need to be addressed openly and immediately for this project to have any credibility.

People with M.E deserve good science and respectful treatment. I feel the M.E charities involved with the MEGA proposal are selling M.E patients short on both counts. Having received no response to my concerns from MERUK, I now block all the charities involved with MEGA.

I feel M.E patients are being bounced into accepting a thoroughly bad deal. Biomedical research has, I feel, been cynically paired with researchers and research methodology the M.E community would otherwise reject.

I do not believe the MEGA team is listening to patients. I feel Professor Holgate chose not to address the concerns brought to him by over two hundred people with M.E. Professor Crawley's name was referenced 15 times in the patients' message and zero times in his reply. I feel this is unprofessional and I feel it shows a high level of disregard for what is an intelligent and engaged patient community.

I raised this concern with Dr Shepherd of the ME Association via Phoenix Rising and via email. I feel that Dr Shepherd's choice not to reply has, again, let these two hundred M.E patients and advocates down. I feel he shares responsibility for Professor Holgate's silence on a critical matter. I think the inclusion of Professor Crawley within MEGA is at odds with M.E "patient values" overall and can only be sustained via the selection of an absolutely tiny patient group, and one given advisory powers only. I do not believe this latter decision will withstand future scrutiny.

"Applications will be considered by a panel consisting of representatives from the ME Association and ME Research UK"

I question the judgement of the ME charities involved in the MEGA study. As such, the very last thing I would do is to submit to that judgement. The MEGA Patient Advisory Group is not for me.

@batteredoldbook
14:51 04/12/2016

 

[Snowdrop]

The more well informed patients are on the PAG the more chance we have of making our voices heard

Even if the patient advisory group managed to get some concessions, do they have the authority of oversight to see that those concessions are implemented?

 

[trishrhymes]

Even if the patient advisory group managed to get some concessions, do they have the authority of oversight to see that those concessions are implemented?

Not a chance!

 

[Jan]

My feelings on the MEGA Patient Advisory Group.

I understand the closing date for applications for membership of the MEGA Patient Advisory Group has been extended from the outrageous 6th December to the merely highly disrespectful 13 December 2016. Applying such a stopwatch to M.E patients on a multi-million pound research proposal seems very wrong to me.

I feel MEGA is an appalling piece of work and I feel its application for funding should be halted immediately. I find it disrespectful that the "CFS/ME" Research Collaborative could bring to M.E patients such a rushed, opaque, and self-contradictory research proposal. The MEGA team have fundamental disagreements over what makes good science and these need to be addressed openly and immediately for this project to have any credibility.

People with M.E deserve good science and respectful treatment. I feel the M.E charities involved with the MEGA proposal are selling M.E patients short on both counts. Having received no response to my concerns from MERUK, I now block all the charities involved with MEGA.

I feel M.E patients are being bounced into accepting a thoroughly bad deal. Biomedical research has, I feel, been cynically paired with researchers and research methodology the M.E community would otherwise reject.

I do not believe the MEGA team is listening to patients. I feel Professor Holgate chose not to address the concerns brought to him by over two hundred people with M.E. Professor Crawley's name was referenced 15 times in the patients' message and zero times in his reply. I feel this is unprofessional and I feel it shows a high level of disregard for what is an intelligent and engaged patient community.

I raised this concern with Dr Shepherd of the ME Association via Phoenix Rising and via email. I feel that Dr Shepherd's choice not to reply has, again, let these two hundred M.E patients and advocates down. I feel he shares responsibility for Professor Holgate's silence on a critical matter. I think the inclusion of Professor Crawley within MEGA is at odds with M.E "patient values" overall and can only be sustained via the selection of an absolutely tiny patient group, and one given advisory powers only. I do not believe this latter decision will withstand future scrutiny.

"Applications will be considered by a panel consisting of representatives from the ME Association and ME Research UK"

I question the judgement of the ME charities involved in the MEGA study. As such, the very last thing I would do is to submit to that judgement. The MEGA Patient Advisory Group is not for me.

@batteredoldbook
14:51 04/12/2016

I would also have signed the letter. 201 patients

 

[docsimsim]

Hello there. I'm against patient involvement in the MEGA PAG and have written a bit on it that I'll post below. I didn't want to add here because my feelings are strong, and I want to direct them to the MEGA team, not to you!

But we can be sure that Afme has its usual suspects applying already. So there will be an illusion of patient participation whether we like it or not. I have exactly the same concerns that many you and many other patients share and have personally written to Prof Holgate and got non reply replies.
But am not going to encourage disengagement from MEGA at this point in time. I've thought long and hard and come to this conclusion.

 

[jodie100]

Although I may be in the minority on this forum I think the MEGA study has a lot of potential to help M.E. patients, as long as patient selection criteria, co-morbidities and exclusion criteria are properly defined. If it could find biomarkers that are diagnostic for M.E. and split people with M.E. into various subgroups based on the causes of their illness, this would be major progress.

I think the MEGA study is very different from the PACE trial in that it will only be studying the actual biomedical findings that are present in patients, and not trying to impose any unfounded theories of treatment. Also unlike PACE I don't think the results of the study for the participant group would be generalised to the M.E. population as a whole, so I don't think it likely that anybody would be inappropriately labelled with a "psychosomatic" illness even if MEGA did find a subgroup of people with M.E. with biomarkers suggesting a "psychosomatic " illness as presumably all patients in the general M.E. population would have to be tested for this biomarker before assuming it applied in their specific case and there would be no blanket conclusions of inappropriate CBT or GET for everybody as a result of findings in one subgroup, and there may not even be such a subgroup at all.

I don't personally view Professor Crawley's involvement in the study as a cause for concern, irrespective of disagreement with some of her treatment recommendations for CFS. She would be one of a large group of scientists in MEGA who are all aiming to find the causes of M.E. based on replicable biomedical research, and I think she could contribute a lot of useful information on M.E. that many of the other scientists may not be aware of e.g. she has written interesting articles on CFS phenotypes in adults and children, has had a good article in the New Scientist recently and her colleague Dr. Hammond has had an excellent article in Private Eye.

As a longterm sufferer I am very tired of studies that end up leading nowhere and the "Why we need MEGA" page on the MEGA website seems to partly explain why ( subgroups not identified, studies too small, differing methodologies testing used) and to offer hope of something much better, just to offer my perspective.

 

[Esther12]

I don't personally view Professor Crawley's involvement in the study as a cause for concern, irrespective of disagreement with some of her treatment recommendations for CFS. She would be one of a large group of scientists in MEGA who are all aiming to find the causes of M.E. based on replicable biomedical research, and I think she could contribute a lot of useful information on M.E. that many of the other scientists may not be aware of e.g. she has written interesting articles on CFS phenotypes in adults and children, has had a good article in the New Scientist recently and her colleague Dr. Hammond has had an excellent article in Private Eye.

There are potentially good things about MEGA, but Crawley is a quack and her recent article in the New Scientist was pretty transparent propaganda that totally side-stepped the real reasons for conflict in this area. Her recent comments on PACE and misrepresentation of the reanalysis just show how untrustworthy she is. I do not think she could contribute anything but harm to MEGA.

 

[Sean]

Studies like MEGA certainly do have serious potential to help us and we certainly do need them, desperately need them.

But they won't be good studies if the likes of Crawley (and Walitt with the NIH studies) are allowed to unduly influence them. Which is what seems to be happening. And it is totally unacceptable.

How much more insult, injury, and delay are we supposed to tolerate just so these precious petals, and their bottom-feeding enablers and clients, don't have to face the truth about themselves and the appalling human carnage left in their wake?

IMHO, the risks of MEGA in its current form far outweigh the risks of demanding it be done cleanly and rigorously, to the highest possible scientific and ethical standards. Nothing less is acceptable to me, and we are owed that at the very least by medical science in the UK. If we don't object now, and get it fixed, it will be too late.

 

[A.B.]

Although I may be in the minority on this forum I think the MEGA study has a lot of potential to help M.E. patients, as long as patient selection criteria, co-morbidities and exclusion criteria are properly defined.

The problem is that Crawley, which is the CFS expert in MEGA, will presumably have a large influence on these matters, and she has a history of flawed patient selection, misleading descriptions of the illness and its symptoms, conflation of CFS with the complaint of fatigue and so on. The usual things from the BPS crowd. There is no reason to think these things will be done well.

Holgate who would be in a position to limit Crawley's influence or replace her has decided to defend her publicly.

This project is not committed to good science.

So all that's left to do is voice our opposition and hope that MEGA is not funded so that the funding can go to better projects.

 

[Valentijn]

I think the MEGA study is very different from the PACE trial in that it will only be studying the actual biomedical findings that are present in patients, and not trying to impose any unfounded theories of treatment.

It has already been stated that MEGA will also involve a lot of psych questionnaires. Do you believe that Crawley will suddenly start interpreting those questionnaires differently? Is she going to start using the actual cut-offs for diagnoses of mood disorders instead of making up her own so she can claim ME patients are "more" depressed or "more" anxious, despite not meeting criteria for a diagnosis of those mood disorders? Will she switch to using questionnaires where physical symptoms and limitations aren't interpreted as indicating a mood disorder?

I don't personally view Professor Crawley's involvement in the study as a cause for concern, irrespective of disagreement with some of her treatment recommendations for CFS.

There are many sources who claim that Crawley views children as cured after she treats them to her satisfaction, to the extent that she will replace their ME/CFS diagnosis with a psych diagnosis if they report continued ME/CFS symptoms. If this is not a deliberate attempt to inflate her success rate and bully parents, it suggests she is highly delusional in her medical capacity. I don't want a delusional crusader doing anything involving patients, and she cannot be trusted to interpret outcomes.

She would be one of a large group of scientists in MEGA who are all aiming to find the causes of M.E. based on replicable biomedical research, and I think she could contribute a lot of useful information on M.E. that many of the other scientists may not be aware of ....

Crawley is not just "one of a large group". Every indication thus far is that she is in charge of the project. She also has a great deal of influence over two of the charities involved in oversight of the study, as well as the CMRC committee.

Which information has she shared in the past that you think would be helpful to the other researchers? That ME/CFS doesn't have to include PEM, even when used as research criteria? That "chronic" fatigue syndrome isn't really chronic if patients can learn to ignore their symptoms?

Esther Crawley is a delusional quack. Most of what she passes on to other researchers will be shockingly inappropriate misinformation.

 

[trishrhymes]

I am wondering whether it would be helpful to start a new thread called something like 'The science of MEGA - patient panel preparation'. What do you think?

My reason for this is that I suspect several of us in here have applied to join the MEGA patient panel. (I've applied but don't expect to be selected because I've been an outspoken, though I think constructive, critic).

Just in case I am chosen, I've decided I need to be really well informed about exactly what definition, sampling method, questionnaires etc. I'd be happy with on scientific grounds, what epidemiological studies might result from these, and exactly what genomics studies do and can achieve, what sample sizes they need etc.

I have started by trying to read up on genome wide association studies (GWAS), including looking at studies Chris Ponting has linked to in his Q and A. The first thing that strikes me is that they used more like 2000 patients, not 12000, I need to learn more on this.

I think the only way patients are going to influence this project, which looks like going ahead whether we approve of it or not, is by challenging them on the science and which data to collect.

I think we're on a hiding to nothing challenging Crawley's involvement. The best we can hope is to considerably clip her wings, perhaps by asking that the project be led by a scientist, not Crawley, and that diagnosis and data collection be under the supervision of someone who understands and uses international research criteria, and understands what PEM is.

I feel very conflicted about this. I so want good science done by good scientists.

 

[TreePerson]

e.g. she has written interesting articles on CFS phenotypes in adults and children,

Please can you direct me to these articles? Is a "phenotype" genetic or behavioural? I had assumed it was genetic and was unaware that she had done any research or testing in in this area.

 

[Keela Too]

My concern is that the patient consultation will simply be an opportunity to talk into a sound proof box.

MEGA can then say they consulted patients, but the MEGA team won't have listened to a word that was said.

Patients will have no more influence than those "inside the tent" groups on the CMRC.

Later, many of us are likely to question what the patient advisory group were thinking when they "passed " this or that feature of MEGA.

The advisory group for FITNET have already suffered this slur, but I wonder if any of their worries about FITNET were heard either?

It seems I have lost all trust in these researchers.

 

[trishrhymes]

Please can you direct me to these articles? Is a "phenotype" genetic or behavioural? I had assumed it was genetic and was unaware that she had done any research or testing in in this area.

The phenotype is what can be observed or measured in the person. Eg eye colour and height are phenotypes. These can be determined by genetic or environmental factors, eg eye colour is a single gene difference, whereas height is a mix of several genes and environmental factors like childhood diet.

I think Crawley says ME/CFS has different phenotypes in children at least partly because she seems to make up her own definition of what ME/CFS is.

If you define it as 3 months fatigue in children, and as 6 months fatigue with PEM and other symptoms in adults, it's not surprising that the 'phenotype' is different, since you have defined it to be so.

To me this seems a bit like saying in children blue eyes includes all non-brown variations including green and grey, but in adults it is only blue eyes, then saying blue eyed children have different phenotypes to adults, which is clearly nonsense. They are only different if you define them differently.

 

[trishrhymes]

My concern is that the patient consultation will simply be an opportunity to talk into a sound proof box.

MEGA can then say they consulted patients, but the MEGA team won't have listened to a word that was said.

Patients will have no more influence than those "inside the tent" groups on the CMRC.

Later, many of us are likely to question what the patient advisory group we're thinking when they "passed " this or that feature of MEGA.

The advisory group for FITNET have already suffered this slur, but I wonder if any of their worries about FITNET were heard either?

It seems I have lost all trust in these researchers.

I share your concern. I am wondering whether it's possible for members of an advisory panel who disagree with aspects of a project and don't manage to influence it, can write a 'minority report' that has to be included in the funding bid????

I rather doubt it, but if a project makes a bid saying it has the support of a patient panel, it should be prepared to say also that the panel was not unanimous. I rather doubt this is how it works. Can anyone enlighten me?