Petition: Opposing MEGA

[Wildcat]

.
To recap:

Selecting patients with 'Well characterised ME' surely does not mean diagnosis according to the NHS Clinic Criteria (NICE) which focuses on fatigue.


Problematical Issues about recruiting MEGA study patients from the NHS CFS clinics:

Recruiting from the NHS CFS referral clinics excludes numerous ME patients groups


…. Including a very great many long term patients who did not seek referral/diagnosis from the clinics, who had been pacing for years, who did not want CBT or GET or graded activity, or who seek private treatments or self treatment anyway, as the clinics offer so little,


Recruiting from the clinics also excludes more severely sick patients who are unable to travel, or who have travelled once but are way too sick to follow through.....


Recruiting from the clinics excludes patients who were advised by the clinic to increase their activity/exercise and who became more ill as a result, and so have nothing more to do with the clinics ….


Some patients who were referred to the clinics by their GPs, who did not previously have an ME diagnosis, were not even diagnosed by a doctor at the clinic ….. but assessed by an OT or Physiotherapist who gave a casual diagnosis of ‘CFS’ based on fatigue.


Why would MEGA recruit patients from the clinics who were diagnosed by the wide broad fatigue based NHS diagnostic criteria?


Isn't it time the MRC did research on CCC/ICC patients? After all the CCC has been in place since 2003 and the ICC since 2011.

.

 

[Sasha]

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

If you need some help, please feel free to post your question and your list of possible responses on this thread and I (or someone else, if I've gone to bed) will create the poll for you.

 

[charles shepherd]

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

Apologies for not answering your question

You may not find this a satisfactory excuse but I'm afraid I just do not have time to answer all the emails that pour into my in box each day and keep up with all the questions that are directed at me or the MEA on the two social media sites where I am very happy to engage with the patient community - MEA Facebook and PR forum - for a couple of hours each day. After that I'm afraid I just have to move on to other work

And as you may know, I have this wretched disease and on top of trying to earn some money to pay the bills I spend around 60 hours per week dealing with MEA work on a purely voluntary basis - if you follow MEA Facebook you will know that my prime concern is with patient information and support

Regarding the petition in support of the MEGA study:

Firstly, I don't think that petition is really a good word to be using here - as it is not being used in the normal sense of a petition. But it may be that there was no other internet tool that could be used instead.

It is simply a way of registering support for a major new piece of research that will involve a large number of people with ME/CFS

To co-incide with a number of presentations on the Big Data study at the CMRC conference in September the planning group decided to engage with the public by giving them an opportunity to say that they supported the study if they wished to do so

This would then be followed by regular email updates on the study, Question and Answer sessions, and blogs by different members of the research group (Chris Ponting has done the first one) to anyone who signed in support

Please could you clarify what the 'unfounded statements' are

If it would help, I would be happy to speak to you on the phone tomorrow when I do a 'telephone clinic' at 5pm

 

[Cheshire]

@charles shepherd Our concern about the involvement of Crawley and White doesn't mean we don't want this study to be done.


If they weren’t part of it, I would be quite interested about this project, especially after Dr Ponting's response.


But I can't help being appalled by the presence of Crawley and White in this study, and the wicked support petition.
You can call that a knee jerk reaction, but I cannot show support to people who have done so much harm to the patients worldwide, who have orchestrated campaigns against us.

 

[charles shepherd]

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.

I think it would be better if this was done by someone who who was acceptable to both side of the debate

 

[BurnA]

I think it would be better if this was done by someone who who was acceptable to both side of the debate

I doubt we really need a poll.

Was just looking over some of the earlist threads on MEGA (MEGA research for M.E./CFS: White & Crawley listed as involved )
where I said this :

We'd all like a great omics study done but this isn't the one for me.

There is no way I can support a study with those people involved.

Many other posts on that thread said similar things.

 

[Sasha]

I think it would be better if this was done by someone who who was acceptable to both side of the debate

What's your concern? Would you like people to perhaps agree the wording of the question first?

It doesn't matter who posts the poll - that's just the mechanics of getting it up on the forum.

Any forum member can start a poll.

 

[charles shepherd]

@charles shepherd Our concern about the involvement of Crawley and White doesn't mean we don't want this study to be done.


If they weren’t part of it, I would be quite interested about this project, especially after Dr Ponting's response.


But I can't help being appalled by the presence of Crawley and White in this study, and the wicked support petition.
You can call that a knee jerk reaction, but I cannot show support to people who have done so much harm to the patients worldwide, who have orchestrated campaigns against us.

Thanks

Yes, I am obviously very well aware of all of these concerns/objections - as is the CMRC

They are being repeated on every page of this discussion!

As far as Professor White is concerned, he has resigned from the MEGA planning group and as I have already said earlier in this discussion I think he should now terminate all involvement with the study.

My views on the PACE trial are, I think, very well known and just in case people are not aware The MEA organised a petition against the PACE trial at the very beginning after we concluded that the trial would not tell us anything new and would be a terrible waste of money. So we are not against petitions that involve medical research.

As for the current membership of the planning group, decisions on additions and subtractions are decisions for the group as a whole. I am not a member of the MEGA planning group.

The MEA clearly has a number of concerns and questions about MEGA which are now being discussed

As I have already said, we are in support of the AIMS of the trial but a final decision on endorsement will be dependent on the protocol that is produced for the research grant application

 

[Barry53]

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

Absolutely. My worries are not with the type of study, quite the opposite in fact. But I need confidence the study will be 100% good science, from top to bottom, from start to finish.

So for me 100% good science includes:-

• Exclusion of anyone proven to have deliberately nurtured bad science.
• A clear up-front protocol, clarifying how the study will be good science.

I would also like to be confident the study is properly designed, and properly implemented throughout. I would especially like the protocol to identify who would be responsible for this aspect, and their qualification for the role. If no-one on the existing list is so qualified, would someone be included who is? For me this was a glaring omission with PACE.

So in case I have not been clear: Yes I am fully in favour of such a trial, provided my above concerns were allayed.

 

[Wildcat]

.
There is still the fundamental concern that the Paediatric doctor involved in MEGA (Dr Crawley) is widely considered as inappropriate for inclusion in the MEGA study (not least due to her MAGENTA study of GET and Graded Activity on children, called 'The children's PACE) ... yet is actually the Vice Chair of the CMRC!

There is a hell of a lot of ground to cover for the CMRC to gain trust from the ME population..
.

 

[Sasha]

BTW, @charles shepherd - #MEAction Network did a poll on Facebook (which not everyone can access, of course) a week or two ago on the circumstances, if any, under which people would support MEGA - it had lots of options. It's closed now - I don't know what the results were or when they'll publish them:

https://www.facebook.com/MEActNetUK...m_source=SocialMedia&utm_campaign=SocialPilot

 

[charles shepherd]

.
To recap:

Selecting patients with 'Well characterised ME' surely does not mean diagnosis according to the NHS Clinic Criteria (NICE) which focuses on fatigue.


Problematical Issues about recruiting MEGA study patients from the NHS CFS clinics:

Recruiting from the NHS CFS referral clinics excludes numerous ME patients groups


…. Including a very great many long term patients who did not seek referral/diagnosis from the clinics, who had been pacing for years, who did not want CBT or GET or graded activity, or who seek private treatments or self treatment anyway, as the clinics offer so little,


Recruiting from the clinics also excludes more severely sick patients who are unable to travel, or who have travelled once but are way too sick to follow through.....


Recruiting from the clinics excludes patients who were advised by the clinic to increase their activity/exercise and who became more ill as a result, and so have nothing more to do with the clinics ….


Some patients who were referred to the clinics by their GPs, who did not previously have an ME diagnosis, were not even diagnosed by a doctor at the clinic ….. but assessed by an OT or Physiotherapist who gave a casual diagnosis of ‘CFS’ based on fatigue.


Why would MEGA recruit patients from the clinics who were diagnosed by the wide broad fatigue based NHS diagnostic criteria?


Isn't it time the MRC did research on CCC/ICC patients? After all the CCC has been in place since 2003 and the ICC since 2011.

.

I don't want to defend the NICE guideline diagnostic criteria for ME/CFS, or the NICE guideline recommendations for ME/CFS

But the NHS hospital-based referral clinics for ME/CFS are receiving large numbers of patients from GPs who, after a basic clinical assessment and investigations to exclude other causes of chronic fatigue, are being sent because the GP feels they have (or may have) ME, CFS or ME/CFS

I do have some feel for the scale of the problem from the number of people we deal with at the MEA on a daily basis who are (often desperately) requiring help with diagnosis, or are already being seen at these clinics

I have no doubt that while the clinics are seeing patients with undiagnosed chronic fatigue, what might be termed psychiatric chronic fatigue, and other conditions causing ME/CFS like symptoms, they are ALSO seeing large numbers of people who have symptoms that are consistent with a clinical diagnosis of either ME or CFS

I agree that most (but not all) of the clinics discriminate against people with severe ME/CFS but there are some who offer a domiciliary (home based) service for diagnosis and/or management

I think the only meaningful way to recruit a decent number of people with severe ME/CFS into this study would be to make use of the cohort we have at the ME Biobank (diagnosed using Canadian and Fukuda criteria) and do home visiting (which is how we collect the Biobank samples from people with severe MECFS)

 

[charles shepherd]

BTW, @charles shepherd - #MEAction Network did a poll on Facebook (which not everyone can access, of course) a week or two ago on the circumstances, if any, under which people would support MEGA - it had lots of options. It's closed now - I don't know what the results were or when they'll publish them:

https://www.facebook.com/MEActNetUK...m_source=SocialMedia&utm_campaign=SocialPilot

Thanks

I wasn't aware of this poll

It would be useful to see the results - if anyone has them

 

[Sasha]

Thanks

I wasn't aware of this poll

It would be useful to see the results - if anyone has them

I think you'd have to get in touch with them via Facebook.

 

[Yogi]

Apologies for not answering your question

You may not find this a satisfactory excuse but I'm afraid I just do not have time to answer all the emails that pour into my in box each day and keep up with all the questions that are directed at me or the MEA on the two social media sites where I am very happy to engage with the patient community - MEA Facebook and PR forum - for a couple of hours each day. After that I'm afraid I just have to move on to other work

And as you may know, I have this wretched disease and on top of trying to earn some money to pay the bills I spend around 60 hours per week dealing with MEA work on a purely voluntary basis - if you follow MEA Facebook you will know that my prime concern is with patient information and support

Regarding the petition in support of the MEGA study:

Firstly, I don't think that petition is really a good word to be using here - as it is not being used in the normal sense of a petition. But it may be that there was no other internet tool that could be used instead.

It is simply a way of registering support for a major new piece of research that will involve a large number of people with ME/CFS

To co-incide with a number of presentations on the Big Data study at the CMRC conference in September the planning group decided to engage with the public by giving them an opportunity to say that they supported the study if they wished to do so

This would then be followed by regular email updates on the study, Question and Answer sessions, and blogs by different members of the research group (Chris Ponting has done the first one) to anyone who signed in support

Please could you clarify what the 'unfounded statements' are

If it would help, I would be happy to speak to you on the phone tomorrow when I do a 'telephone clinic' at 5pm

Thank you for finally acknowledging after tagging you four times when you were on the forum. I appreciate your constraints by being on various social media.

I am shocked that you are now saying it is not really a petition.

".Firstly, I don't think that petition is really a good word to be using here - as it is not being used in the normal sense of a petition."

It is A PETITION.

Change.org is a PETITION website.

https://www.change.org/about

The MEGA page has the word petition 14 times on it.

You have used the word petition.

I do not wish to have a separate debate about what that is if it is not a petition. It is a petition.

CMRC and MEGA have completely failed to listen or engage with patients to garner support and have instead resorted to a petition. We are not stupid.

The counter petition had been opposed by you and some have said it could stop MEGA and genomic research but as you say it could be merely to gauge support like the original petition and should therefore not have such strength.

I still do not understand why a petition site was used. I have not received a response a satisfactory response to the serious question over the petition. The original petition should be removed as it is unethical and unprofessional given the misinformation and changes since it was originally put up.


People were given only two choices to support it in its current form or not by the petition. Their was no avenue to support MEGA in a different form.

There are important and very serious issues which have arisen about the conduct of MEGA and CMRC which have been raised in all the MEGA threads here on PR and CMRC and MEGA themselves have endangered the study and not patients due to their conduct. I think you should re-read all the comments on PR about MEGA as you have misunderstood peoples legitimate and reasonable concerns and constructive criticism.

I shall try and respond to you fully here by 5pm tomorrow.

 

[Marky90]

Its very simple Charles:

Get Crawley off the project, and use criteria with PEM.

Research with the above has been consistently horrendous

I`m sorry to be "vocal" about it

 

[Barry53]

And as you may know, I have this wretched disease ...

I did not realise that. Many thanks for your endeavours here.

 

[Hutan]

For the avoidance of doubt:
if White and Crawley were removed (really removed), I think I'd like MEGA to go ahead

 

[charles shepherd]

Thank you for finally acknowledging after tagging you four times when you were on the forum. I appreciate your constraints by being on various social media.

I am shocked that you are now saying it is not really a petition.

".Firstly, I don't think that petition is really a good word to be using here - as it is not being used in the normal sense of a petition."

It is A PETITION.

Change.org is a PETITION website.

https://www.change.org/about

The MEGA page has the word petition 14 times on it.

You have used the word petition.

I do not wish to have a separate debate about what that is if it is not a petition. It is a petition.

CMRC and MEGA have completely failed to listen or engage with patients to garner support and have instead resorted to a petition. We are not stupid.

The counter petition had been opposed by you and some have said it could stop MEGA and genomic research but as you say it could be merely to gauge support like the original petition and should therefore not have such strength.

I still do not understand why a petition site was used. I have not received a response a satisfactory response to the serious question over the petition. The original petition should be removed as it is unethical and unprofessional given the misinformation and changes since it was originally put up.


People were given only two choices to support it in its current form or not by the petition. Their was no avenue to support MEGA in a different form.

There are important and very serious issues which have arisen about the conduct of MEGA and CMRC which have been raised in all the MEGA threads here on PR and CMRC and MEGA themselves have endangered the study and not patients due to their conduct. I think you should re-read all the comments on PR about MEGA as you have misunderstood peoples legitimate and reasonable concerns and constructive criticism.

I shall try and respond to you fully here by 5pm tomorrow.

My understanding of a petition is that it is something people sign and it is then sent to a council, government department etc

This petition is something where people can express support and register to receive regular information on what is happening with the study

I don't know about these sort of internet tools but I think it would have been better if the MEGA planning group had see a tool (if there is one) where people can register support, and sign up for information - rather than a site which involves petitions in the normal sense of the word

Not sure that this is really worth getting into a detailed debate over

 

[BurnA]

I think it would have been better if the MEGA planning group had see a tool (if there is one) where people can register support, and sign up for information

Like maybe .... a website.