MEGA research for M.E./CFS: White & Crawley listed as involved

AndyPR

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I think this project have a huge potential if it´s done correctly and so we should be prudent with our actions and reactions.
Do we have any sign that CMRC is listening or are there some relevant patients organisations/advocates who raised our concerns? I think the research projects should always cooperate with patients. The concerns raised are also reasonable - we are just asking about the right patients selection (no oxford criteria) and they should understand that the people like White and Crawley are not at all acceptable for ME community
I sent an email to the chair of the CMRC and the reply I received is shown in this post http://forums.phoenixrising.me/inde...brainstorming-stage.47107/page-11#post-771428
 
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I think this project have a huge potential if it´s done correctly and so we should be prudent with our actions and reactions.
Do we have any sign that CMRC is listening or are there some relevant patients organisations/advocates who raised our concerns? I think the research projects should always cooperate with patients. The concerns raised are also reasonable - we are just asking about the right patients selection (no oxford criteria) and they should understand that the people like White and Crawley are not at all acceptable for ME community
Can I assure you (and everyone else on PR) that things are definitely happening 'behind the scenes' and that I have communicated the fact to members of the CMRC Board that members of the patient community are expressing perfectly genuine concerns and valid questions about this new research. I also have concerns and questions.

But I hope you will appreciate that I am in a slightly difficult position here in that I am a member of this group, a member of the Board of the CMRC, a supporter of what this big data study is trying to achieve, but not a member of the steering group that is preparing the research grant application.

It is not always easy and there is a limit to what I can say in public at times.

This is not a criticism of you but could I also point out to the very tiny minority of people who have sent me what are really quite unpleasant or offensive emails over the past few days about the position I am taking that I have had this disease for over 30 years, and in a quite severe form early on following a chickenpox encephalitis

So I am just as keen as everyone else to find diagnostic biomarkers and effective forms of treatment for everyone with ME/CFS
 
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I sent an email to the chair of the CMRC and the reply I received is shown in this post http://forums.phoenixrising.me/inde...brainstorming-stage.47107/page-11#post-771428
Andy

I know that you have started a constructive conversation with Stephen Holgate

But can you remind us where things are when it comes to a sending a letter to the CMRC which actually lists all the key concerns, criticisms and questions that people on PR want answering from those who are involved in this study

As I have already made clear, I think this is the most important and appropriate action you should be taking at this point - unless you want to try and scupper it here and now

I know that some people are sending individual letters - some of which are not really thought through - to the CMRC

But this is not really the best way to proceed (in my opinion)

And am I correct in assuming that the proposed petition is currently off the PR agenda?

Again, not the best move (in my opinion) in the current situation
 

AndyPR

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This is not a criticism of you but could I also point out to the very tiny minority of people who have sent me what are really quite unpleasant or offensive emails over the past few days about the position I am taking that I have had this disease for over 30 years, and in a quite severe form early on following a chickenpox encephalitis
I would like to point out, again, that Charles and I may be (seem to be, perhaps) in disagreement about a number of points to do with this study but I absolutely condemn any kind of abusive behaviour such as highlighted here.
 

Tuha

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Can I assure you (and everyone else on PR) that things are definitely happening 'behind the scenes' and that I have communicated the fact to members of the CMRC Board that members of the patient community are expressing perfectly genuine concerns and valid questions about this new research. I also have concerns and questions.

But I hope you will appreciate that I am in a slightly difficult position here in that I am a member of this group, a member of the Board of the CMRC, a supporter of what this big data study is trying to achieve, but not a member of the steering group that is preparing the research grant application.

It is not always easy and there is a limit to what I can say in public at times.

This is not a criticism of you but could I also point out to the very tiny minority of people who have sent me what are really quite unpleasant or offensive emails over the past few days about the position I am taking that I have had this disease for over 30 years, and in a quite severe form early on following a chickenpox encephalitis

So I am just as keen as everyone else to find diagnostic biomarkers and effective forms of treatment for everyone with ME/CFS
Charles, I 100 % appreciate your work. I can imagine all what you described and it has to be difficult. Everything what I wanted to say that this project has a huge potential and the patients community should be prudent about the steps which will take but also CMRC could listen to the patients especially regarding the bad history (PACE, ignorance,...). I think the cooperation between patients and CMRC could bring a lot of benefits to both sides and could avoid a lot of misunderstandnisses.
Also I dont have time to read through all the posts and threads about this topic so I just wanted to ask in generally how it is going because I am not sure if I understood good everything.
So thanks again for your hard work
 

Countrygirl

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This is not a criticism of you but could I also point out to the very tiny minority of people who have sent me what are really quite unpleasant or offensive emails over the past few days about the position I am taking
@charles shepherd I am so sorry to hear that. It is inexcusable, but the people who stoop to these tactics do not represent the patient community. I do hope this stops as it must be extremely unpleasant to receive messages of this nature.
 
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I hope these criticisms are duly noted and set in stone that PR et al raised them BEFORE the project goes ahead, and not just after they announce that CBT/GET are still the most effective treatments for ME/CFS and we're all just over reacting 'cos it brought about results we don't like.

There is simply NO EXCUSE to involve psycho quacks IN ANY research into biomedical features of ME/CFS any more. NO EXCUSE.

Grrr, carry on folks...
 

slysaint

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I am still none the wiser as to exactly what the MEGA project objectives are.
And why hasn't anyone tagged AfME?
 

Sasha

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But can you remind us where things are when it comes to a sending a letter to the CMRC which actually lists all the key concerns, criticisms and questions that people on PR want answering from those who are involved in this study
@AndyPR - I just want to mention that if you want your letter to come from Phoenix Rising (as opposed to a few named signatories who happen to have used Phoenix Rising to communicate) you will need the permission and approval of the Phoenix Rising board.

@Mark, @Jonathan Edwards.

I am sorry you have been getting offensive emails, @charles shepherd. That's appalling.

I'm glad to see that Prof. Holgate responded to Andy's email. His reply may not have satisfied people but it's the opening of comms. If we want to open comms and keep them open, and be seen as credible ourselves, I suggest we keep our comments on his emails polite and professional.

These are very high stakes and we need to act accordingly.
 

AndyPR

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Andy

I know that you have started a constructive conversation with Stephen Holgate

But can you remind us where things are when it comes to a sending a letter to the CMRC which actually lists all the key concerns, criticisms and questions that people on PR want answering from those who are involved in this study

As I have already made clear, I think this is the most important and appropriate action you should be taking at this point - unless you want to try and scupper it here and now

I know that some people are sending individual letters - some of which are not really thought through - to the CMRC

But this is not really the best way to proceed (in my opinion)

And am I correct in assuming that the proposed petition is currently off the PR agenda?

Again, not the best move (in my opinion) in the current situation
Currently I have sent an email
Professor Holgate,

I'm sure you are busy so I'll attempt to keep this brief and to the point.

The recently announced MEGA project has been met with, what seems, a number of serious concerns by a large section of the patient population, which is hindering the public support for the project. I would imagine that some, if not all, of these concerns are due to misunderstanding and lack of information so I was hoping that you could advise me of the best route that patients could take to have these concerns addressed.

Many thanks in anticipation.
and received a reply
Thank you for your email. There clearly is a misunderstanding which is always a risk when trying to explain complex reasoning behind experimental design in this hypothesis-free approach to uncovering novel causative pathways in complex diseases. I am consulting my colleagues at the CMRC to try to offer the best answer without getting too tied up with detail.

We will get back to you.

Kindest Regards,

Stephen.
Other PR members have been working on an open letter, I don't know the current status of that.

Individual communications, of which mine was one of, will be a product of the CMRC not setting up a route for concerns to be addressed, their problem not ours.

My idea of a petition is on hold at the moment, I wouldn't claim to be representing all of PR, in fact, I'm sure that I'm not. The main reasons that it is on hold are that I received a prompt reply from Professor Holgate and that I'm trying to postpone my crash from all this effort for as long as possible. Wording the petition would have cost me, and fielding the understandable queries and concerns from people who didn't agree with it would have cost me even more. It sounds a childish argument but if CMRC withdraw their petition, I'll set my idea for one aside (I have no belief they would do this by the way but I'm just stating my position).
 

Sasha

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While I'm at it: I think now that it would be better to direct the open letter solely at Prof. Holgate. It's clear that things are happening behind the scenes and in the meantime, I don't think we want to risk putting scientists off getting involved in this project by dragging them into this quagmire.

This isn't like the NIH situation where they'd already invested huge effort, had written a protocol (which takes huge amounts of time) and were all committed. It would be so, so easy for so many of the excellent bioscientists on this UK project to walk away and we'll be back in the dark ages.
 

AndyPR

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And why hasn't anyone tagged AfME?
Personally, for the same reason I don't use a chocolate teapot. Seriously, they should be involved but obviously aren't, which shows how much use they are for the broad patient community.

ETA: Don't they have their own patient forums? Perhaps there is a large debate ongoing there?
 

AndyPR

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@AndyPR - I just want to mention that if you want your letter to come from Phoenix Rising (as opposed to a few named signatories who happen to have used Phoenix Rising to communicate) you will need the permission and approval of the Phoenix Rising board.
I appreciate our posts crossed but I have stated that other members are working on a letter which I don't know the status of (I have not kept up with the thread) and also that I do not consider myself representing PR in regard to the petition.
 
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I hope these criticisms are duly noted and set in stone that PR et al raised them BEFORE the project goes ahead, and not just after they announce that CBT/GET are still the most effective treatments for ME/CFS and we're all just over reacting 'cos it brought about results we don't like.

There is simply NO EXCUSE to involve psycho quacks IN ANY research into biomedical features of ME/CFS any more. NO EXCUSE.

Grrr, carry on folks...
On a point of accuracy…...

The MEGA study is NOT concerned with treatment of ME/CFS - certainly at this stage

It has nothing to do with assessing or supporting CBT and/or GET
 

Yogi

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Andy

I know that you have started a constructive conversation with Stephen Holgate

But can you remind us where things are when it comes to a sending a letter to the CMRC which actually lists all the key concerns, criticisms and questions that people on PR want answering from those who are involved in this study

As I have already made clear, I think this is the most important and appropriate action you should be taking at this point - unless you want to try and scupper it here and now

I know that some people are sending individual letters - some of which are not really thought through - to the CMRC

But this is not really the best way to proceed (in my opinion)

And am I correct in assuming that the proposed petition is currently off the PR agenda?

Again, not the best move (in my opinion) in the current situation
Hi Dr Shepherd

Thanks for your communication. Sorry to hear about the abusive emails that you are getting. That is unacceptable.

Hopefully we should be able to have a robust constructive discussion on PR.

You said regarding counter petition that it is not a good idea. I think all options should remain on the table if communication from the CMRC is not immediately improved and if communication doesn't achieve anything.

Clearly the original petition is a very bad idea given all the issues described in the MEGA threads!

Can that original petition be removed until these issues are all clarified as it is quite deceptive to gather support for MEGA in its current state?

As has been said we are grateful for you coming on to here to explain things but surely as the patient representative that is AFME's duty which they are neglecting to fulfill?
 

snowathlete

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2. Communication. You say information has been out there in the public domain regarding this. If we are being asked to support this why are we then expected to dig out the information ourselves - would you expect to do the same if you were asked to support something in your professional capacity, or would you expect to have your inevitable queries answered by the person asking for your support? The implicit message that we are getting at the moment is that we shouldn't worry our little patient heads about this, the grown-up scientists have done all the thinking for us and we should just sign the 'patient support' cheque.
I agree with what AndyPR has said regarding the poor communication and lack of information that has been given to patients. It feels to me like patients are still seen as a tool and not a partner. The CMRC wanted their support but invested very little in making sure the study would be acceptable to patients. I know that AfME might not have raised any concerns about the BPS lot because they have a history of letting patients down, but I find it hard to believe that the MEA and ME Research UK didn't speak up and point out patients would not accept their involvement. Perhaps they did not speak up enough though, who can say?

The CMRC also failed to make sure appropriate information was available to patients, to enable a proper informed decision. That's worrying to me because again it suggests they don't see patients as partners but as a tool. So when the study actually starts and patients are being enrolled, are they going to be properly informed? Or are they just seen as lab rats to be coaxed into doing what the researchers want them to do?

I think there has to be a big change in the way ME/CFS research is done in the UK when it comes to attitudes toward patients. It's no good ticking the box that you have an ME/CFS charity on board, which no doubt gives the study extra points in funding applications, if all it really is is ticking the box. Most patients in the UK who are informed, which is only a portion, are still furious with AfME over their part in PACE, so the charity is not representative of patients. PACE claimed to be endorsed by patients because of AfME's involvement but I think everyone in the world can see patients won't accept being left out in the cold and having someone misrepresent them.

What is needed is proper engagement, and it would be good if this project really embraced that rather than paying lip service to it. That means actually acting on what patients say, not just ticking boxes and listening then ignoring them. There is an opportunity here to make this study genuinely endorsed by patients, but you don't get that without meaning it.

And hovering over everything else is the spectre of the PACE trial. We, as patients, are being asked to ignore everything that has gone before in regards to research for ME in this country, while those directly involved in PACE, Peter White, and those who use the bogus results of the PACE trial to support their work, Esther Crawley et al, are allowed to sour this project by their very presence. So far, no good reason has been given for their inclusion in a biomedical research project, they are adherents to the BPS model of this disease, if they are involved then I believe we have a right to assume that they will want to fit this study into their unscientific model. They have to go.
I agree with AndyPR, they have to go. If those running this study try to keep hold of these two then what will happen is patient opposition will simply increase. PACE was a turning point in the community, and patients decided they simply had had enough. Patients will not accept these people who have said such awful things about them, promoted harmful treatments, promoted a model of disease that blames patients, carried out piss-poor research, supported recognised quack treatments, made misleading, and even completely false, claims about research...the list goes on.

Probably it's the experience of others in the project that these two are both charming people and they can't see what's wrong with having them involved. I understand that. Getting rid of them may be personally difficult. But patients judge them by the things they have done and the things they have said, and how that has impacted patient lives. Let's not forget, that is what this is about: patients. Or it should be. It is a study on a disease that patients suffer from. Well, patients say no to having these two involved, so it's important to take heed of that.
 
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@charles shepherd ... you wrote earlier (in one of these threads, I get them mixed up) that you are not on the Steering committee of the CMRC. So who is on the steering committee?

Is there a dedicated site of the CMRC on which the different committees are listed with committee members. I am sure there used to be one but I can't find it from searches, which keep taking me to the AFME page on the CMRC, which does not give me the information I sought, but does urge me to sign the petition in favour of the MEGA study (which I declined to do).

It would be preferable to have straightforward info on the CMRC, rather than info being filtered through AFME's typical persuasive rhetoric.
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Edit addition (not specifically to Dr Shepherd):

It may appear logical to CMRC members to have a patient charity (AFME) as a kind of go-between between the CMRC and the patient population. But AFME does not have a history of transparancy and accountability when it comes to justifying its policies and actions. The broader patient population will not accept or trust AFME to speak on the patients behalf (with good reason) , nor trust AFME to relay info from the CMRC to the patients.
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eafw

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But can you remind us where things are when it comes to a sending a letter to the CMRC which actually lists all the key concerns, criticisms and questions that people on PR want answering from those who are involved in this study

As I have already made clear, I think this is the most important and appropriate action you should be taking at this point - unless you want to try and scupper it here and now ...

... And am I correct in assuming that the proposed petition is currently off the PR agenda? Again, not the best move (in my opinion) in the current situation
Any letter that does get done will be from those who contribute and agree with it, that is not purporting to speak for all patients or or the membership of PR. It will be hard enough to even get that done as we do have a variety of views on what should and should not be included.

I do think it is worth trying to put a letter together - carefully, and bearing in mind that as usual we (the patients) are speaking from a position of having to justify the right to be taken seriously, rather than being dismissed as clueless/fanatics by people like Holgate and Crawley, or threatened that the proper scientists are going to walk off and take their bats (fancy Big Data machines) home with them at the first whiff of critical questioning.

could I also point out to the very tiny minority of people who have sent me what are really quite unpleasant or offensive emails over the past few days about the position I am taking
This is not acceptable, and hopefully you know it really is a tiny minority. If they have come from people on PR, pretty sure it would be a bannable offense. The majority here do understand and support your work for our community.