Petition: Opposing MEGA

[charles shepherd]

It's great that the MEA says this about GET. But your response didn't answer @Jan. Why is the MEA effectively advertising (and therefore endorsing) NHS clinics that are prescribing GET for people with ME on its web page?

For example:



This makes as much sense as a lung cancer charity saying that smoking is bad in one part of its website and then promoting cigarettes in another part.


This is not a justification for providing the information without comment. It actually makes it all the more important for the MEA to be clearly advising patients about the safety of the treatments offered at these clinics.



.

As I've already stated, this is an MEA directory of ALL the hospital based referral services for people with ME/CFS here in the UK

The list is obviously quite long and if you carefully analyse the websites for all of these clinics you will probably find that most of them mention CBT and GET - as they are supposed to follow the NICE guideline on ME/CFS

However, out in the real world, most of these NHS services take a rather more pragmatic approach to management and many of them do actually offer a fairly sensible approach to activity/energy management based on pacing rather than a dogmatic GET approach that is based on the seriously flawed inactivity and deconditioning model of causation

So just because an NHS service refers to GET, this does not mean that they are going to be promoting a form of activity management that we believe is unfit for purpose

As I have already exlained to Jan, the front/home page of the MEA website contains a very clear and focussed summary of our position on CBT, GET and Pacing

And we are always very happy to discuss what we know about an individual NHS service with someone requiring information if they want to do so

However, I think it would also be sensible to place a clear note about our recommendations regarding CBT, GET and Pacing at the start of the MEA service directory as well

I will discuss with Tony Britton, who looks after the MEA website, how this can best be done to make sure it is easily spotted when people consult the MEA service directory for information on a local ME/CFS service

 

[charles shepherd]

@charles shepherd So if a patient asks for advice on clinics on your facebook page, they are then referred to the list, then go to clinic. Don't you see, they may never look at the the page on which you warn against the treatments! You need to put the warning on the page with the list of clinics, otherwise you are just endorsing the clinics and adding to the numbers of people harmed by these treatments.

Yes, I think it would also be sensible to place a clear note about our recommendations regarding CBT, GET and Pacing at the start of the MEA service directory as well

I will discuss with Tony Britton, who looks after the MEA website, how this can best be done to make sure it is easily spotted when people consult the MEA service directory for information on a local ME/CFS service

 

[Jo Best]

Jo - This person was NOT blocked from MEA Facebook because she kept complaining about the fact that the MEA website has a directory of all the NHS referral services in the UK

There were other reasons relating to our Facebook code of conduct - just like PR we do (verr occasionally) have to remove someone from posting on our social media

People are free to complain about the MEA NHS services directory and I regularly respond when this issue is raised

The MEA believes that people have a right to know about ALL the NHS ME/CFS referral services in the UK

And the pros and cons of individual ME/CFS clinics are regularly discussed our Facebook page

You don't need to capitalise to emphasise for me Charles, it looks like you're shouting. I didn't say the person was complaining. I said she "raised it" with MEA. She wasn't criticising MEA for holding a list, she was saying there should simply be a caution that NICE guidance means that treatments offered at the NHS clinics are as you describe. I think that was a helpful suggestion because the newly-diagnosed are bound to believe the specialist clinics offer the best available treatments for their illness, that's only natural, so a simple sentence with a link to your further detail would be a service to prospective patients. It's unreasonable to expect people newly ill to scour the wall of a charity facebook page for information that they wouldn't actually be expecting to find, especially when they have brain disorder. Anyhow, I think we digress from the subject of Opposing MEGA. I've made a request of you twice on this thread concerning the email chain between yourself and Stephen Holgate so I see you are now online and hope you will oblige in the interests of transparency and clarity and cooperation. I'll find the post and repost to keep on topic.

 

[charles shepherd]

You don't need to capitalise to emphasise for me Charles, it looks like you're shouting. I didn't say the person was complaining. I said she "raised it" with MEA. She wasn't criticising MEA for holding a list, she was saying there should simply be a caution that NICE guidance means that treatments offered at the NHS clinics are as you describe. I think that was a helpful suggestion because the newly-diagnosed are bound to believe the specialist clinics offer the best available treatments for their illness, that's only natural, so a simple sentence with a link to your further detail would be a service to prospective patients. It's unreasonable to expect people newly ill to scour the wall of a charity facebook page for information that they wouldn't actually be expecting to find, especially when they have brain disorder. Anyhow, I think we digress from the subject of Opposing MEGA. I've made a request of you twice on this thread concerning the email chain between yourself and Stephen Holgate so I see you are now online and hope you will oblige in the interests of transparency and clarity and cooperation. I'll find the post and repost to keep on topic.

Yes, I think it would also be sensible to place a clear note about the MEA recommendations regarding CBT, GET and Pacing at the start of the MEA service directory as well

I will discuss with Tony Britton, who looks after the MEA website, how this can best be done to make sure it is easily spotted when people consult the MEA service directory for information on a local ME/CFS service

I will do this first thing on Saturday morning - as we will both be working over the weekend

Regarding the email trail - I don't have this to hand.

It has been a long day and it is nearly 10pm

My email to Stephen was a very short instant reply to his query regarding the Invest in ME position on the OMEGA petition

I pointed out to Stephen that Jonathan had been making (in my opinion) some very helpful, constructive and critical comments about the MEGA study here on the PR forum - and that these points needed to be addressed and discussed during the planning stage of this research proposal

I therefore suggested to Stephen that he should write to Jonathan - rather than direct to Invest in ME

Jonathan provided a detailed and very helpful response to this letter and I hope that the points he has made will be taken seriously by the MEGA planning group

 

[Jo Best]

In the spirit of transparency would you @charles shepherd please now publish your originating email to Stephen Holgate. Thank you in anticipation of your cooperation in this matter.

Here we go, hoping third time lucky that you will oblige by posting the other emails in the chain between Stephen Holgate and yourself @charles shepherd as Chair and member of the board of the CMRC. Thank you.

 

[charles shepherd]

Here we go, hoping third time lucky that you will oblige by posting the other emails in the chain between Stephen Holgate and yourself @charles shepherd as Chair and member of the board of the CMRC. Thank you.

Regarding the email trail - I don't have this to hand.

It has been a long day and it is nearly 10pm and I'm clocking off to spend some time with my family

My email to Stephen was a very short instant reply to his query regarding the Invest in ME position on the OMEGA petition

I pointed out to Stephen that Jonathan had been making (in my opinion) some very helpful, constructive and critical comments about the MEGA study here on the PR forum - and that these points needed to be addressed and discussed during the planning stage of this research proposal

I therefore suggested to Stephen that he should write to Jonathan - rather than direct to Invest in ME

Jonathan provided a detailed and very helpful response to this letter and I hope that the points he has made will be taken seriously by the MEGA planning group

 

[Jo Best]

@charles shepherd I have to log off now too, will discuss further tomorrow. Good night.

 

[worldbackwards]

However, out in the real world, most of these NHS services take a rather more pragmatic approach to management and many of them do actually offer a fairly sensible approach to activity/energy management based on pacing rather than a dogmatic GET approach that is based on the seriously flawed inactivity and deconditioning model of causation

My understanding (though not based on personal experience) is that particular service @Hutan mentions is pretty good all things considered. Which just goes to show.

 

[Jan]

Yes, I think it would also be sensible to place a clear note about our recommendations regarding CBT, GET and Pacing at the start of the MEA service directory as well

I will discuss with Tony Britton, who looks after the MEA website, how this can best be done to make sure it is easily spotted when people consult the MEA service directory for information on a local ME/CFS service

Thank you Charles, I will feel a lot better if new patients are properly informed, it breaks my heart to keep hearing about patients being made severe/bedbound due to these 'treatments'.

 

[potbatch]

If Esther Crawley genuinely called PACE a great trial in the recent past I cannot see how she can put in charge of serious science. I actually thought she was too clever to make such a fool of herself.

Here's the proof: a link to the broadcast (on 5/11/16) where Esther Crawley calls PACE 'a great, great trial'.

http://www.bbc.co.uk/programmes/p04cd54b#play

She goes on to say: 'they did as good as anybody could have done'. The interview starts at about 8-40 but if you want to cut straight to 'great, great trial' it's around 18-20. If anyone has a musical bent, you could build a great rap out of those two soundbites. And if Prof Edwards could provide us with a soundbite of 'I cannot see how she can be put in charge of serious science' then even better.

Btw, many thanks to Jonathan Edwards for the *wonderful" response to Stephen Holgate: a 'helpful response' indeed.

(This whole business is very sad so it helps to get the occasional laugh out of it.)

Potbatch aka Spoonseeker

 

[Barry53]

Yes, I think it would also be sensible to place a clear note about our recommendations regarding CBT, GET and Pacing at the start of the MEA service directory as well

I will discuss with Tony Britton, who looks after the MEA website, how this can best be done to make sure it is easily spotted when people consult the MEA service directory for information on a local ME/CFS service

I have just been looking at the MEA website, and I think that will be really good.

I was going to suggest a very simple simple note, with a link to the CBT/GET information page, but have changed my mind. For a great many people that would be heavy overload, and they would rapidly give up reading it. The math equation at the front would probably scare quite a few off! Please do not misunderstand me, I think it is an excellent web page for many of us. But for many the salient non-technical bits are too well hidden in amongst the slightly more technical bits, and would get missed.

So I would suggest a much simplified message that cuts to the chase, with a link for those who wish to look at the more detailed information.

 

[ianorourko]

Regarding the email trail - I don't have this to hand.

It has been a long day and it is nearly 10pm and I'm clocking off to spend some time with my family

My email to Stephen was a very short instant reply to his query regarding the Invest in ME position on the OMEGA petition

I pointed out to Stephen that Jonathan had been making (in my opinion) some very helpful, constructive and critical comments about the MEGA study here on the PR forum - and that these points needed to be addressed and discussed during the planning stage of this research proposal

I therefore suggested to Stephen that he should write to Jonathan - rather than direct to Invest in ME

Jonathan provided a detailed and very helpful response to this letter and I hope that the points he has made will be taken seriously by the MEGA planning group

Here we go, hoping third time lucky that you will oblige by posting the other emails in the chain between Stephen Holgate and yourself @charles shepherd as Chair and member of the board of the CMRC. Thank you.

I second that request. Perhaps you could post the actual email exchange in the morning - in the interest of transparency. It's pretty quick and simple to do and I'm quite sure that everybody would appreciate it a lot!

Thanks!

 

[JoanDublin]

However, out in the real world, most of these NHS services take a rather more pragmatic approach to management and many of them do actually offer a fairly sensible approach to activity/energy management based on pacing rather than a dogmatic GET approach that is based on the seriously flawed inactivity and deconditioning model of causation

It's exactly that mixed message which keeps patients in an ignorant and dangerous place. Basically what you are saying is that patients are playing Russian roulette when they go to these services and with a bit of luck they might hit on the ones who take a sensible approach to activity management.

That is just not good enough, especially for the newly diagnosed. It doesn't take a genius to tell patients or their Carers that the patient must stay rested and only operate at an activity level which does not make their symptoms worse. Anybody, and I mean anybody, will automatically want to increase their activity if they feel able. If they are not able, then they are not able. Simple.

Anything beyond simple instructions, such as the NICE guidelines with CBT and GET, is downright dangerous. It is incomprehensible that you would take the position you do on GET but fail to put a proviso on every link to any NHS clinic to let them know your position on GET.

So long as there are clinics who are bound to operate within those damaging guidelines, I don't see why your website would even link to them. Better to have a big fat disclaimer on one page stating clearly why you won't recommend them and tell readers to google the clinics if they are so inclined. Now THAT would be a clear statement backing up what you said in that Radio Scotland interview

 

[Jan]

Please excuse my ignorance, but could someone please tell me the remit of the CMRC? Do they decide what research needs to carried out? Do they allocate research funds or pass on recommendations to the MRC? What else do they do?

What exactly has the CMRC achieved since it was established? I don't mean that sarcastically, I genuinely would like to know what has actually been happening over the last decade.

Because sadly, out here in the REAL WORLD, patients are suffering, patients are struggling, patients have no doctors to turn to and face disbelief when they do try. Patients are losing hope, patients are taking their own lives, and patients are dying!! This is the REAL WORLD, not the research world of well paid doctors, not the CMRC or any other bloody organisation.

Some have lost sight of what the REAL WORLD is. It should not be about politics or proving your theory is right.

So Mr Holgate and co, don't feign ignorance of why ME patients are anti your MEGA proposal, it insults us even more. Enough patients (nearly 3000) have signed the OMEGA petition now for the 'minority' card to be put to bed. 12,000 asked for PACE trial results to be released, yet you insult those 12,000 by denying the shocking reanalysis results. It's a national scandal, which has had international implications, but still you support it. It's truly sickening.

 

[Jan]

Also, can someone please explain why the ME charities can not have any of the MRC funds for their research, it's another ridiculous situation? Patients have had to fund the research for many years, yet the MRC state that no bids are being received for biomedical research despite their best efforts. I know you are going to say it's not the correct protocol for a charity to ask for research funds, but why not for heavens sake? They are the only groups in the UK doing the biomed research. More politics, more decades. of my life pass by, waiting... and waiting... and waiting.........

I have an idea, lets have a great big study of mega proportions and let the people who don't think the illness is really physical beyond the first month or so, run it, and choose the participants. Let's call it MegaPace. We will spend years collecting very important data with which to psycho-analyse the patients, then maybe a bit of blood etc at a later date, some years in the future. This very important data about this very important (we are led to believe) disease will help us decide which psychological treatment each patient needs. Some need cbt and get, some just need get and some just need a good shake and a kick up the arse. But just in case at some point in the future the biomedical proof for this very important disease comes out, we would like to state on record that we believe this is a biological illness.

 

[halcyon]

I was sent forms to complete to join the CMRC. Months went past and I heard nothing back. I phoned his secretary to ask whats happening to my application - she told me that my application had gone to Esther Crawley in Bristol for screening -- I was like "what". It then turned out that my application for membership had to be approved by the CMRC at their next meeting - this happened, and I was informed I needed to supply factual evidence of CFS/ME publciations in the last year - at the time I was only beginning to publish in this field.

Perhaps I don't have a good grasp on the structure and function of the CMRC, but how is this not a massive conflict of interest on the part of Crawley as vice-chair? As a researcher herself that receives funding, how can she be allowed to be in direct control of which other researchers are allowed to join the collaborative? Would this not allow her to weed out potential competitors so that she can ensure more funding flows to her and her institution?

 

[eafw]

Please excuse my ignorance, but could someone please tell me the remit of the CMRC?

This is a version of the current charter, don't know if it is the final copy

https://www.actionforme.org.uk/uploads/pdfs/cmrc-charter-aug-2016.pdf

"The aim of the CMRC is to drive increased interest and investment in CFS/ME research"

there's more detail in the objectives

This is the original 2013 version https://www.actionforme.org.uk/uploads/pdfs/cmrc-charter.pdf

how is this not a massive conflict of interest on the part of Crawley as vice-chair? As a researcher herself that receives funding, how can she be allowed to be in direct control of which other researchers are allowed to join the collaborative?

Also in the charter "The executive will consider all applications for membership and reserves the right to seek further information, approve, decline or defer proposals as appropriate and without obligation to provide reasons for such decisions"

They've written it in to purposely give themselves control, no pretence of genuine open collaboration. A closed and corrupt little club.

 

[Jonathan Edwards]

Perhaps I don't have a good grasp on the structure and function of the CMRC, but how is this not a massive conflict of interest on the part of Crawley as vice-chair? As a researcher herself that receives funding, how can she be allowed to be in direct control of which other researchers are allowed to join the collaborative? Would this not allow her to weed out potential competitors so that she can ensure more funding flows to her and her institution?

These are essentially my thoughts, as expressed in my email to Dr Holgate.

Normally, bodies associated with research divide into clear groups: Academic Societies like British Society for Rheumatology; Charities, like Arthritis Research UK or IiME which fund research; Government funding bodies, like MRC or NIHR; and research investigators who are grant applicants and holders. There have probably always been instances where distinctions are blurred but it seems to be more common now.

In the past the normal way for academics to set up a body to promote research into an area would be to set up an academic (learned) society. Membership would be open to all in many cases although it might be reserved for members of a profession or even by election like the Royal Society. Such a body would not give out research funds (beyond bursaries for travel etc.) nor apply for them.

The CMRC appears to have taken on the functions of all these different types of body in a way that certainly raises conflict of interest issues. I think this is a serious matter and my understanding is that Richard Simpson of IiME may be taking it up with the MRC, who somehow also seem to be involved.

What I think ME research in the UK needs is not a CMRC but an open ME Research Society that fosters research but is not involved in funding issues. The problem is that such a society would normally be set up by physicians with an academic interest. Unfortunately, up until recently prominent physicians with an academic interest appear not to have understood either what is good science or what is conflict of interest. The main reason why researchers are likely to be put off studying ME is, apart from the fact that it is a very difficult problem to study, that the field has been dominated by bad science and political game playing by bad scientists. A clean break is needed but I doubt it will come from CMRC, which will wither on the vine with time because infighting will develop. Maybe then the UK will be able to join the international academic community.

 

[Chrisb]

Thanks to @eafw for providing those links. I had been going to ask if anyone had them.

Comparison of the two Charters is an interesting exercise. As both are called "Charters" one would suppose that the later one wholly replaces and supercedes the earlier. But this does not make sense as the earlier document sets out procedural formalities which are essential for due governance and these are wholly omitted from the later.

This would suggest that there are now further documents "behind the curtain", as the saying goes. It is not clear to me whether these are available to the general public, the general membership, or merely the High Priests.

I have copied below the "membership requirements":

3.2 Membership Requirements Good scientific debate promotes and drives the highest quality of basic and applied evidencedbased and peer-reviewed research in to CFS/ME and is actively encouraged by the CMRC. This includes respectful debate and objective, constructive criticism in order to encourage critical thinking. Channels for ‘good’ scientific debate include writing letters to journals, asking questions, using established legal channels.

Membership of the CMRC does not prevent any member charity or organisation from pursuing its own aims and objectives as laid out in its founding documents.

This appears to be waffle. Nowhere does it state what members shall and shall not do or what sanctions may be imposed in a case of breach. It does not appear to preclude factual or reasoned discourse in measured terms outside the membership. The fear of such discussion which appears to have been induced seems unnecessary within the terms of the Charter.

To take the matter rather off topic, one can understand the preference for the name CFS/ME over ME/CFS. Were it called ME/CFS the group name would be MCRC. This would remove the subliminal and misleading message that the organisation has the authority of the MRC.

 

[TiredSam]

Maybe then the UK will be able to join the international academic community.

The real, real world.