Petition: Opposing MEGA

[Hutan]

I signed the OMEGA petition. I might have worded some things a bit differently, but it is what we have to send a clear message. If enough of us sign it, I think we can decrease the global influence of the behaviouralist viewpoint on ME.

I hope the good, genuine researchers, including, it seems, Chris Ponting, will take the time to meet with Invest in ME to better understand the issues and perhaps to talk about how they can collaborate to move ME research forwards. A genomics study of sufficient scale would be great if developed in association with people like those in Invest in ME. A genomics study developed with Esther Crawley and without widespread support from the patient community is likely to end badly.

I think researchers would be amazed at the level of support they would get from people with ME if they moved away from people associated with PACE and the 'BPS' school.

 

[Simon]

@Simon, could you explain PACE and the re-analysis to Ponting?

I'm afraid I have an unfortunate habit of explaining that to too many people that I come across, there's no escape . I can't speak for him, but I think it's a safe bet, that as with the other omicists, Ponting wouldn't be investing his time in this (check his publication record, he's a busy guy!) if he thought that PACE and the BPS model were the answer to mecfs.

 

[Jo Best]

I'm afraid I have an unfortunate habit of explaining that to too many people that I come across, there's no escape . I can't speak for him, but I think it's a safe bet, that as with the other omicists, Ponting wouldn't be investing his time in this (check his publication record, he's a busy guy!) if he thought that PACE and the BPS model were the answer to mecfs.

Yebbut is he working on the assumption that the specialists in MEGA are actually specialists, i.e. does he realise the likelihood that at least around half (possibly more with the children) the samples won't be from people ME/CFS? This is the crux of the problem really that I see with such a large study. I think the data will be unreliable.

 

[A.B.]

I'm afraid I have an unfortunate habit of explaining that to too many people that I come across, there's no escape . I can't speak for him, but I think it's a safe bet, that as with the other omicists, Ponting wouldn't be investing his time in this (check his publication record, he's a busy guy!) if he thought that PACE and the BPS model were the answer to mecfs.

I believe Ponting simply doesn't know how incompetent and dishonest White and Crawley are. Once he realizes, chances are he will be upset and shocked just as Tuller, Edwards, Coyne, etc. were. This would be a realistic way for MEGA to be reformed.

 

[Barry53]

But it's true

But there are different ways of stating the truth, and some can be more effective than others, at persuading people to act the way you would wish. The goal is not exposing the truth - that goal has already been achieved. The much more difficult goal is convincing recalcitrant folks and organisations to change their ways.

 

[docsimsim]

Yes, MEGA has Peter White and Esther Crawley on board, and they certainly wouldn't be in my dream team. But MEGA is mostly new biomed talent coming in to mecfs to do the world's biggest study. It will look at
Proteins
Genes
Gene expression
epigenetics
Metabolism

It will look for the molecular mechanisms for subgroups.

i've been waiting for a study on this scale, using many different biological approaches, for years. Plus it will generate at ton of samples, and data, for other researchers to use and explore.

That could be a game changer and spur on a whole new wave of biomed research. It is not another PACE. It's not perfect, and I hope MEGA will seriously engage with patients to improve the study, but I do think this study had the potential to make huge inroads into understanding mecfs.

No psychiatrist is officially involved in MEGA, so I'm unsure how much of the BPS school ideas actually will be represented in it. White retired from research, and whilst they say he still has an advisory role, to me it's a kinder way of saying he is more or less out. Crawley is not a psychiatrist, so she might even have some ideas related to the biomedical research, which after all is what this MEGA study is about, we shouldn't immediately assume the worst.

If we look at UK CFS/ME research, even with its imperfections MEGA is a step in the right direction, considering that up to this day all major UK research was basically around the BPS model and GET/CBT.

Esrher Crawley is as we speak spending £1millon of precious NHS funds on MAGENTA. Magnets is PACE only even worse. It's PACE conducted online to children and adolescents with ME. So it's a study which conducts CBT not even face to face, but online!!!
The fact that she's not called a psychiatrist is totally irrelevant. In fact her being a paediatrician is even more dangerous to any child/young person with ME. She also conducted SMILE (the pseudo scientific snail oil therapy which is basically brain washing) in children and adolescents. IMO she's done just as much of not more damage to ME patients by advocating that ME is psychosomatic and recovery can only be achieved by correcting faulty illness beliefs by CBT and by patients doing GET. The fact that someone who doesn't even accept that ME has an organic cause and is due to pathology not psychology is in charge of a huge multi million £ study is totally unacceptable. Her track record shows that she is the last person who should be involved in a project claiming to be an OMICS study!

No psychiatrist is officially involved in MEGA, so I'm unsure how much of the BPS school ideas actually will be represented in it. White retired from research, and whilst they say he still has an advisory role, to me it's a kinder way of saying he is more or less out. Crawley is not a psychiatrist, so she might even have some ideas related to the biomedical research, which after all is what this MEGA study is about, we shouldn't immediately assume the worst.

If we look at UK CFS/ME research, even with its imperfections MEGA is a step in the right direction, considering that up to this day all major UK research was basically around the BPS model and GET/CBT.

 

[docsimsim]

I'm afraid I have an unfortunate habit of explaining that to too many people that I come across, there's no escape . I can't speak for him, but I think it's a safe bet, that as with the other omicists, Ponting wouldn't be investing his time in this (check his publication record, he's a busy guy!) if he thought that PACE and the BPS model were the answer to mecfs.

I think the bottom line is that Crawley and Afme should be replaced in the MEGA team. Afme were the patient organisation who acted against the interest of all ME patients by facilitating the now disgraced PACE trial and Esther Crawley is at present conducting MAGENTA (PACE for kids/adolescents, online) to the tune of £1million of NHS funds. The 3rd member of the MEGA team is Crawley's post doc research fellow. This means 3/4 of the MEGA team are pro BPS model of ME. They need to be replaced before any further proceedings

 

[Jan]

I'm afraid I have an unfortunate habit of explaining that to too many people that I come across, there's no escape . I can't speak for him, but I think it's a safe bet, that as with the other omicists, Ponting wouldn't be investing his time in this (check his publication record, he's a busy guy!) if he thought that PACE and the BPS model were the answer to mecfs.

Each and every one of these omicists needs to be fully aware of the PACE scandal and the involvement of Crawley in PACE. How can we even begin to put our trust in people if they aren't even informed of the history of what got us to this point? They HAVE to be told we have no faith in EC or anyone who works with her, so that's 3 out of 4 of the MEGA team. If they could break away from her they would have our full support. This study does not need her.

 

[BurnA]

And the reply was

I'm sorry, Andy. While I'm not about to 'hide' this petition, I don't think what you're asking is particularly fair. You asking us to actively promote a petition which is against something the MEA openly supports – at least in the early stages, while the various principles involved are being sorted out.

Thanks for sharing this correspondence.

I think it is fair to ask the MEA to inform their members of this petition. Just because the MEA have taken a position of support, why would they deny their members the opportunity to have a different opinion by deliberately not informing them of this petition.
Are they afraid their members would sign it ?

 

[charles shepherd]

Thanks for sharing this correspondence.

I think it is fair to ask the MEA to inform their members of this petition. Just because the MEA have taken a position of support, why would they deny their members the opportunity to have a different opinion by deliberately not informing them of this petition.
Are they afraid their members would sign it ?

No - MEA members are free to see this petition on MEA Facebook and sign it if they want to

I have been working away for the past 48 hours and have only been dealing with urgent emails

On a quick catch up this morning I see that the OMEGA petition has been placed on the MEA Facebook page

When I have time later today I am going to comment on the petition and ask Tony to insert this comment into our coverage of the OMEGA petition

 

[trishrhymes]

No - MEA members are free to see this petition on MEA Facebook and sign it if they want to

I have been working away for the past 48 hours and have only been dealing with urgent emails

On a quick catch up this morning I see that the OMEGA petition has been placed on the MEA Facebook page

When I have time later today I am going to comment on the petition and ask Tony to insert this comment into our coverage of the OMEGA petition

Just had a quick look. Can't see it there. Am I going gaga?

Edit - just had another look - it's still in the visitor posts if you scroll down them, but not in the main news feed, so unlikely to be seen by many people. I assume it will be moved into the main feed once you've added your comment, @charles shepherd.

 

[AndyPR]

745 signatures now

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[A.B.]

@Rose49 what does Ron think about this project and the involvement of White and Crawley?

 

[Jo Best]

Thank you for your insight @Jonathan Edwards.

I was very concerned that a counter petition of this sort would be an own goal. However, reading this I cannot really fault it and am actually impressed by much of the wording and argument. The up front reference to researchers whose work has been shown to be substandard may seem inflammatory but we are past that now and I think being to the point is a strength. The point that MEGA is not the only game in town is well made. From my point of view I have yet to see any information that would convince me that any original thought has gone into the project. I am not a fan of Big Data. They jumped the gun and it is entirely legitimate to say so because it is an insult to the patients' intelligence.

So I think I would encourage all members to sign. If the petition is there and is making a fair point good numbers of signatures would have impact.

 

[charles shepherd]

Some brief comments on the OMEGA petition from Dr Charles Shepherd:

As I have already made clear on numerous occasions:

1 Although I am a member of the Board of the CMRC (CFS/ME Research Collaborative) I am not part of the MEGA (ME/CFS Epidemiology and Genomics Alliance) study planning group

2 The protocol (i.e. design of the study) is still being discussed and developed - especially in relation to patient selection, how people with severe ME/CFS will be included, the use of samples from the ME Biobank, and the people who will be actively involved in carrying out the work

3 The MEA supports the AIMS of the MEGA research study - which is to gather comprehensive information using a variety of new biomedical technologies (e.g. epigenetics, metabolomics, proteomics etc) to see if there are abnormalities or biomarkers which are present (and not present) in the numerous clinical sub-groups of people who come under the ME/CFS and undiagnosed chronic fatigue umbrellas. This could obviously be of significant benefit when it comes to separating people who have ME or ME/CFS from those with undiagnosed chronic fatigue. The findings could also lead onto assessing new forms of treatment which are based on these findings

4 In order to do this research, blood samples will need to be taken from the wide range of people who have ME, ME/CFS and some form of undiagnosed chronic fatigue. You cannot do this type of study by restricting the sample size to people who just have one of the favoured research definitions for ME or ME/CFS if you want to find good evidence of sub-grouping and separation from undiagnosed chronic fatigue

5 Just like the patient community, The MEA is very keen to see blood samples from the ME Biobank - where we have just got on with research and collected blood samples from over 500 people included in the MEGA study. This figure translates into over 30,000 blood sample aliquots available for research purposes. In addition to the ME/CFS samples, the ME Biobank blood sample collection in the UCL Biobank at the Royal Free Hospital in London also includes a cohort with severe ME/CFS, healthy controls, and samples from people with multiple sclerosis

I can fully understand the comments, criticisms and questions that have been raised by the patient community in relation to the MEGA study, and some of the doctors involved. I have been forwarding this feedback to my colleagues on the Board of the CMRC

And having played a role in organising the MEA petition that was opposed to spending money of the PACE trial, I can understand why the patient community may wish to organise a petition against a research study that they do not support

However, it is disingenuous to imply that the group of biomedical research scientists listed below, who form the core planning group, were involved in the PACE trial, or are supporters of the biopsychosocial model of causation and management of ME/CFS. The MEGA study is NOT a treatment trial and it does NOT link to the PACE trial.

As already noted, the MEGA study is still in the early planning stages - so discussions are taking place about all aspects of the study, including patient selection procedures and the inclusion of a severe ME/CFS cohort

The concerns of the patient community are being taken note of at the highest level at the CMRC

So I would question whether it is really sensible for the patient community to be producing a petition to try and stop the study in its tracks at this stage in the development process

There is also a real risk here in that a significant number of the various -omic research scientists involved, most of whom have international reputations in regard to their areas of expertise and in many cases are new to ME/CFS research, and have expressed a willingness to take part in this study, will interpret this very negative patient reaction as indicating that the patients they want to help do not want to see them involved in ME/CFS research

These scientists have plenty of other diseases they could easily go off and research - where their input would be widely welcomed by the patients involved

If we now lose their input at this point as a result of this petition, I think it will be very difficult to find others of equal stature to replace them

And so a study which aims to find out if there are objective abnormalities or biomarkers that could help to dismantle the current NICE guideline 'one size fits all' approach to causation and management of ME/CFS could be lost for a considerable period of time

My final and key point goes back to the fact that the MEGA study is still in the process of being discussed and prepared

If the final proposal that is submitted for funding is not acceptable to the MEA, especially in relation to patient selection, then The MEA will NOT endorse it

So now is not the time to try and kill the MEGA study off for good............

Further information relating to MEGA study:

• ME/CFS Biobank: http://cureme.lshtm.ac.uk/researchers/accessing-the-biobank/

• Previous MEA statement on the MEGA study: http://www.meassociation.org.uk/201...irth-says-dr-charles-shepherd-3-october-2016/

• Part of the distinguished panel of research scientists who are currently involved in planning the MEGA study:

* 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)

• First explanatory blog from Professor Chris Ponting: https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18203963 - which focusses on what is called multi-omics

"Multi-omics is the study of multiple genome-scale, often population-based, data sets and it lies at the heart of modern biomedical science. We are interested in carefully linking DNA variants to changes in molecules, processes, cells, organs and individuals. To do so we analyse high-throughput DNA, RNA abundance, DNA-binding, and phenotype (both human and model organism) data from primary tissues as well as from cell lines and single cells. One focus of our research is on genes that are not used to make protein – so called long noncoding RNAs – particularly those that modulate mitochondrial function in different cells and tissues. Other projects are investigating the biology of single cells, specifically neurons, glia and thymic epithelial cells.

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[charles shepherd]

No - MEA members are free to see this petition on MEA Facebook and sign it if they want to

I have been working away for the past 48 hours and have only been dealing with urgent emails

On a quick catch up this morning I see that the OMEGA petition has been placed on the MEA Facebook page

When I have time later today I am going to comment on the petition and ask Tony to insert this comment into our coverage of the OMEGA petition

Tony has now placed the OMEGA petition on the main part of MEA Facebook - along with my comments, so that our members can see both sides of the debate:

https://www.facebook.com/permalink.php?story_fbid=1183703918353931&id=171411469583186

 

[slysaint]

the MEGA study is still in the process of being discussed and prepared

Just thought I would draw your attention to this thread as it raises some very valid issues regarding the whole MEGA project.
http://forums.phoenixrising.me/index.php?posts/777114/

 

[Esther12]

However, it is disingenuous to imply that the group of biomedical research scientists listed below, who form the core planning group, were involved in the PACE trial, or are supporters of the biopsychosocial model of causation and management of ME/CFS.

Did the petition do this? When I read it through yesterday, that was not the implication that I took from it.

Will have to give it another read.

 

[Jo Best]

The petition is clear and to the point, so it's up to the reader if they infer hidden meanings.
The petition factually states that 'key members and advisors' are involved in PACE and MAGENTA.
Given that two names were removed from the body of the MEGA petition within a few days of being posted, it would not be sensible for a counter-petition to name names.

 

[snowathlete]

Some brief comments on the OMEGA petition from Dr Charles Shepherd:

As I have already made clear on numerous occasions:

1 Although I am a member of the Board of the CMRC (CFS/ME Research Collaborative) I am not part of the MEGA (ME/CFS Epidemiology and Genomics Alliance) study planning group

2 The protocol (i.e. design of the study) is still being discussed and developed - especially in relation to patient selection, how people with severe ME/CFS will be included, the use of samples from the ME Biobank, and the people who will be actively involved in carrying out the work

3 The MEA supports the AIMS of the MEGA research study - which is to gather comprehensive information using a variety of new biomedical technologies (e.g. epigenetics, metabolomics, proteomics etc) to see if there are abnormalities or biomarkers which are present (and not present) in the numerous clinical sub-groups of people who come under the ME/CFS and undiagnosed chronic fatigue umbrellas. This could obviously be of significant benefit when it comes to separating people who have ME or ME/CFS from those with undiagnosed chronic fatigue. The findings could also lead onto assessing new forms of treatment which are based on these findings

4 In order to do this research, blood samples will need to be taken from the wide range of people who have ME, ME/CFS and some form of undiagnosed chronic fatigue. You cannot do this type of study by restricting the sample size to people who just have one of the favoured research definitions for ME or ME/CFS if you want to find good evidence of sub-grouping and separation from undiagnosed chronic fatigue

5 Just like the patient community, The MEA is very keen to see blood samples from the ME Biobank - where we have just got on with research and collected blood samples from over 500 people included in the MEGA study. This figure translates into over 30,000 blood sample aliquots available for research purposes. In addition to the ME/CFS samples, the ME Biobank blood sample collection in the UCL Biobank at the Royal Free Hospital in London also includes a cohort with severe ME/CFS, healthy controls, and samples from people with multiple sclerosis

I can fully understand the comments, criticisms and questions that have been raised by the patient community in relation to the MEGA study, and some of the doctors involved. I have been forwarding this feedback to my colleagues on the Board of the CMRC

And having played a role in organising the MEA petition that was opposed to spending money of the PACE trial, I can understand why the patient community may wish to organise a petition against a research study that they do not support

However, it is disingenuous to imply that the group of biomedical research scientists listed below, who form the core planning group, were involved in the PACE trial, or are supporters of the biopsychosocial model of causation and management of ME/CFS. The MEGA study is NOT a treatment trial and it does NOT link to the PACE trial.

As already noted, the MEGA study is still in the early planning stages - so discussions are taking place about all aspects of the study, including patient selection procedures and the inclusion of a severe ME/CFS cohort

The concerns of the patient community are being taken note of at the highest level at the CMRC

So I would question whether it is really sensible for the patient community to be producing a petition to try and stop the study in its tracks at this stage in the development process

There is also a real risk here in that a significant number of the various -omic research scientists involved, most of whom have international reputations in regard to their areas of expertise and in many cases are new to ME/CFS research, and have expressed a willingness to take part in this study, will interpret this very negative patient reaction as indicating that the patients they want to help do not want to see them involved in ME/CFS research

These scientists have plenty of other diseases they could easily go off and research - where their input would be widely welcomed by the patients involved

If we now lose their input at this point as a result of this petition, I think it will be very difficult to find others of equal stature to replace them

And so a study which aims to find out if there are objective abnormalities or biomarkers that could help to dismantle the current NICE guideline 'one size fits all' approach to causation and management of ME/CFS could be lost for a considerable period of time

My final and key point goes back to the fact that the MEGA study is still in the process of being discussed and prepared

If the final proposal that is submitted for funding is not acceptable to the MEA, especially in relation to patient selection, then The MEA will NOT endorse it

So now is not the time to try and kill the MEGA study off for good............

Further information relating to MEGA study:

• ME/CFS Biobank: http://cureme.lshtm.ac.uk/researchers/accessing-the-biobank/

• Previous MEA statement on the MEGA study: http://www.meassociation.org.uk/201...irth-says-dr-charles-shepherd-3-october-2016/

• Part of the distinguished panel of research scientists who are currently involved in planning the MEGA study:

* 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)

• First explanatory blog from Professor Chris Ponting: https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18203963 - which focusses on what is called multi-omics

"Multi-omics is the study of multiple genome-scale, often population-based, data sets and it lies at the heart of modern biomedical science. We are interested in carefully linking DNA variants to changes in molecules, processes, cells, organs and individuals. To do so we analyse high-throughput DNA, RNA abundance, DNA-binding, and phenotype (both human and model organism) data from primary tissues as well as from cell lines and single cells. One focus of our research is on genes that are not used to make protein – so called long noncoding RNAs – particularly those that modulate mitochondrial function in different cells and tissues. Other projects are investigating the biology of single cells, specifically neurons, glia and thymic epithelial cells.

Dr Charles Shepherd
Hon Medical Adviser, MEA

I like your post Charles. The only bit I would question is this bit:

However, it is disingenuous to imply that the group of biomedical research scientists listed below, who form the core planning group, were involved in the PACE trial, or are supporters of the biopsychosocial model of causation and management of ME/CFS. The MEGA study is NOT a treatment trial and it does NOT link to the PACE trial.

Maybe you've seen something I haven't but I've not seen anyone imply that the biomedical researchers were involved in PACE.

The problem I've seen raised is that Peter White who was the lead investigator of PACE is involved in MEGA. That is true, right? And there are others like Crawley who are supporters of the biopsychosocial model involved, no? Has anyone said that the biomedical researchers have been involved in this stuff? I haven't seen it but then I don't use things like Facebook so maybe I've missed something. I support the biomedical researchers involvement, I think most people do, that does not remove the problem though.