IMEA-New M.E. Association

[Dx Revision Watch]

Well the IMEA site appears to be down at the moment - perhaps the webmaster or mistress is adding Gethin Price's bio.

Were I a member of the Board of Trustees of the UK ME Association, I'd be pretty miffed that a group of patients setting themselves up as an unelected patient organisation, with no prior consultation with their constituency of interest chooses to adopt a name so similiar to, and liable to being associated with that of the longstanding MEA.

Was no consideration given to this by the two UK "Directors" Ms Dunn and Mr Price? Had they consulted first with patients, internationally, this would have been raised.

They are laying themselves open to being mixed up by the media and by the international public with the MEA and might well attract accusations that they are trading off the name of a long established patient organisation.

Suzy

 

[Dx Revision Watch]

A bio has now been added to the site for "Gethin Price":

Gethin Price
Gethin Price suffers from M.E. Although he has been educated as a chemist, he is not able to work in his field due to the illness. He is grateful to his family and friends for their patience and understanding of the limitations caused by his illness. He is not happy with the lack of treatment for M.E. patients in the United Kingdom and getting better treatment is one of his goals in working with IMEA.

 

[eric_s]

I have no idea who Gethin Price is, but if it's Gerwyn then i think some things should be clarified. First, we need to be sure Gethin Price is the real name. And then you could not have "Gerwyn's" comments on the website, at least i would not think that it's a good idea. They would then have to use the real name there. Also many comments to scientific journals were signed with "Gerwyn Morris". I don't think that if you want to do real advocacy you can use a fake name when writing to journals or even on the website of "your" organisation. So if it is Gerwyn i think he should start to use only his real name.

As far as the MEA is concerned, i think they will probably have to live with that. The "International" pretty clearly distinguishes the IMEA from the UK MEA in my view, but i might be wrong. And i don't know if the IMEA is a US or UK association, if they're in the USA it doesn't matter anyway. But i think nobody has a monopoly for advocacy and we should all work together towards our common goal more than trying to protect one's own turf.

Nobody would probably have had the idea to start a new organisation if they had felt that the current situation for PWCs is good and the existing orgs are succesful enough. I don't know much about the MEA and i don't want to be ungrateful for all the work those people have done, but look at the situation in the UK (and all around the world)... Is it good? Before the XMRV finding i would say you could only call it catastrophical. Now it looks as if we have a chance to put things right, but we still have a long enough way to go (but i believe we can make that way in a pretty short time if we do it right).
So i don't feel like any existing organisation has a moral right to stand in the way of a new one that wants to try to do it better. Sorry if this sounds hard, but they did not get us what we need in 20 or 30 years. I know it's a hard task of course, that's true.

 

[Dx Revision Watch]

I have no idea who Gethin Price is, but if it's Gerwyn then i think some things should be clarified. First, we need to be sure Gethin Price is the real name. And then you could not have "Gerwyn's" comments on the website, at least i would not think that it's a good idea. They would then have to use the real name there. Also many comments to scientific journals were signed with "Gerwyn Morris". I don't think that if you want to do real advocacy you can use a fake name when writing to journals or even on the website of "your" organisation. So if it is Gerwyn i think he should start to use only his real name.

I agree.

As far as the MEA is concerned, i think they will probably have to live with that. The "International" pretty clearly distinguishes the IMEA from the UK MEA in my view, but i might be wrong. And i don't know if the IMEA is a US or UK association, if they're in the USA it doesn't matter anyway. But i think nobody has a monopoly for advocacy and we should all work together towards our common goal more than trying to protect one's own turf.

The IMEA does not appear to be registered in any way as any form of organisation in any country. The "CEO" and one of the "Directors" are UK based.

Suzy

 

[Undisclosed]

I posted this on another thread but will add it here as people are questioning the link between Gerwyn/Gethin.

Originally Posted by ME agenda
And Gethin Price, United Kingdom, anybody?

How about Gethin Price is Gerwyn Morris.

Proof may be here.

Rebuttal:

The research in CROI established that at least some strains of XMRV could have hypothetically originated by recombination of two endogenous retroviruses found in one particular strain of nude mouse. However, it has not been established that this strain of mouse was actually used in creating the cell line in question. The results published by Garson et al (published in Retrovirology) (1) also need to be considered.

They demonstrated that a strain of XMRV could have entered the human population during the creation of the DU145 cell line in 1978. This research did not involve mice, and does not make any comment about the pathogenicity of the gamma retroviruses which are now replicating in the human population, it merely comment about their origin. The act of two erv sequences recombining to form a replicative entity has thus far never been demonstrated (2).

The previous was written by Gerwyn Morris -- http://webcache.googleusercontent.c...cd=4&hl=en&ct=clnk&gl=ca&source=www.google.ca

The next is written by Gethin Price -- http://news.sciencemag.org/sciencenow/2011/03/fresh-doubts-about-connection-be.html?ref=hp

Gethin Price
The research in CROI established that at least some strains of XMRV could have hypothetically originated by recombination of two endogenous retroviruses found in one particular strain of nude mouse.Unforunately it has not been established that this strain of mouse was actually used in creating the cell line in question. The results published by Gerson et al(published in Retrovirology) also need to be considered.They demonstrated that a strain of XMRV coulld have entered the human population during the creation of the DU145 cell line in 1978.

Identical except that a member of the me/cfs forum edited the first one for him because he is notoriously bad at writing, punctuation, and grammar.

 

[SOC]

A bio has now been added to the site for "Gethin Price":

Gethin Price
Gethin Price suffers from M.E. Although he has been educated as a chemist, he is not able to work in his field due to the illness.

Whoops, there's one I've missed for my list of reported educational accomplishments of Gerwyn. Unless Gerwyn is not Gethin... or.... Wow. Confusing.

 

[Merry]

I posted this on another thread but will add it here as people are questioning the link between Gerwyn/Gethin.


How about Gethin Price is Gerwyn Morris.

he is notoriously bad at writing, punctuation, and grammar.

He's a lawyer, a lab technician, a psychologist (sort of), a chemist (almost), who is "notoriously bad at writing, punctuation, and grammar"? And he purports to be an expert on retrovirology? Who is this guy? And he has followers?

 

[Cort]

Here's Pat Sonnett, Board Member of Phoenix Rising, full post on this issue

I am writing in response to your solicitation of patient questions to be submitted during your meeting with Dr. Elizabeth Unger at the CDC. One of the questions posted on your site at www.imeassoc.com/IMEA_to_meet_with_CDC.html includes the sentence "Patients do not want the CAA biobank samples used in studies." I respectfully request that this statement/question be deleted from those being presented to Dr. Unger.

Regardless of how one feels about the CAA, its BioBank is composed of ME/CFS patient samples collected from Dr. Lucinda Bateman, Dr. Stephen Gluckman, Dr. Nancy Klimas and Dr. Charles Lapp, highly respected pioneers in the ME/CFS field. These patient samples could provide valuable information for research and to specifically ask that they not be used would be a disservice to the ME/CFS community. We all want to get well and excluding these samples would only serve to impede our progress.

I have had this illness for over two decades and I want every possible avenue explored that might help me live a normal life. I am a patient of Dr. Nancy Klimas and my patient samples have been sent to the CAA BioBank with the expectation that doing so might improve not only my own life, but the lives of all those afflicted with this horrible illness. To say that these samples should not be used for research purposes is a slap in the face to all of us who have contributed to the BioBank.

The IMEA itself doesn't lose anything by not asking that the BioBank samples not be used in studies. The patient community itself, however, stands to lose a great deal. I ask that you reconsider your position on this and remove it from your questions/statements to Dr. Unger.

Thanks KJM...Gethin price uncovered....

 

[insearchof]

As many of you know, the ME community has strong beliefs on acknowledging and maintaining the distinction between ME and CFS. I personally share them.

By exclusively employing the use of the term ME to the exclusion of CFS in the IMEA title, this group initially gave me the impression that they were advancing the interests of ME (Ramsay, Hyde/Nightingale ME). But upon a closer examination, I cannot be certain that they are doing so at all, and they have not made any attempted to make the distinction clear anywhere (which I would have expected from a new ME org, possibly disatisifed with those that have failed to do so). Further, I get the distinct impression that whilst they are using the term ME, they are in fact referring to CFS.

Is this new org ignorant of the medical distinctions and history surrounding both ME and CFS and or the finer details outlined in historical ME medical literature? Or is it a case of this new org unilaterally and mistakenly employing the use of the term ME when it should be using the term CFS?

Don't they know and understand that even the CDC today recognises the distinction, and clearly states that ME is not CFS on their web site? Won't they look more than a little foolish as an ''ME group'in the eyes of the CDC, asking about how the CDC feels about ''CFS'' classifications ( in ICD 10 CM US) and other ''CFS'' related issues?

Further, use of the term ''international'' also initially gave me the impression that they were some sort of umbrella org, for the various ME groups across the world. Clearly this was not correct and based on the current confusion arising from their references to CFS and their use of definitions on ME (which in fact appear to be more like CCC CFS than true ME), I am fast forming the view that there might be one or two ME orgs/groups out there, that will not be too happy about this and this new org's use of the term ''international'' (suggesting that they may well represent the views of other ME orgs).

If IMEA is, as they state, insistent on strict definitions and criteria, then I am sure they will understand the need to be equally strict and dilligent in the correct use and employment of the terms ME and CFS. If not, then they can be sure to receive objections from many ME patients and advocates.

 

[Dx Revision Watch]

He's a lawyer, a lab technician, a psychologist (sort of), a chemist (almost), who is "notoriously bad at writing, punctuation, and grammar"? And he purports to be an expert on retrovirology? Who is this guy? And he has followers?

A veritable polymath, Merry, and now it seems, an advocacy organization "Director".

And he must be getting on a bit now because in July, last year, in a thread that resulted in my quitting ME-CFS Forum when my presence there became untenable after I had challenged those who were creating potential slogans for buttons, banners and T-shirts like

"CFS = XMRV = living death"

"NEW AIDS = CFS"

"MILLIONS HAVE A NEW RETROVIRUS

THEY ARE TRYING TO COVER IT UP

YOU KNOW IT AS CFS"

"ARE YOU AT RISK?
CFS = XMRV = AIDS-LIKE RETROVIRUS"

"AIDS = HIV
CFS = XMRV"

"Death is one way to lose life
XMRV is another"

"Got XMRV?
One in 10 people do!"

"CFS
A LIVING DEATH
CONTAGIOUS
IGNORED
COULD YOU BE NEXT?"


Gerwyn had claimed during that thread, "I,ve had ME before you were born Suzy. It does not come much tougher than that !"


So I asked Ger (as they fondly call him on ME-CFS Forum) how old he thought I was and he wouldn't answer.

So I told him I was 57 and still he did not apologise for his arrogance.

So I asked him how old he was and still he would not answer.

So I asked him whether there was some kind of hierarchy of stakeholders?

Gerwyn is a patient.
Suzy is a carer.
Suzy's views are less valid?

Well, you can read Ger's comments for yourself:

http://www.mecfsforums.com/index.php/topic,548.0.html

BTW, a post at the end of that thread by "Since" calling me a "troublemaker" was subsequently removed. Then the thread was locked.

If Gerwyn is Gethin, I hope he is polishing his people skills.

Suzy

 

[Dx Revision Watch]

Won't they look more than a little foolish as an ''ME group'in the eyes of the CDC, asking about how the CDC feels about ''CFS'' classifications ( in ICD 10 CM US) and other ''CFS'' related issues?

I agree, insearchof that there is an anomoly here: IMEA are calling, in their Mission Statement, for the "elimination" of the term "CFS" but appear to be planning to lobby CDC for CFS to be coded alongside PVFS and ME in ICD-10-CM. Why cannot at least one of the several involved see this?

I did not ask the CEO to clarify the paradox that it evident to both of us, because other than set out to Ms Dunn what the proposals for ICD-11 are and how ICD-10-CM would be out of line with over 110 countries, worldwide, come 2014, and other than point out that CFS is proposed to be retained in the R codes for ICD-10-CM - not "reclassified", as she has stated, and other than ask her to set out on what evidence she bases one of her statements about ICD-11, I really do not want to engage with these folk.

Further, use of the term ''international'' also initially gave me the impression that they were some sort of umbrella org, for the various ME groups across the world.

Yes, it makes them sound a little as though they are functioning like ESME.

It all smacks of a serious lack of forethought in the rush to get an org or "pseudo" org launched before the forum that Carter admins launched a website/org of their own. (And given that Patricia Carter is the Admin of ME-CFS Forum and that other Directors of IMEA are forum members, it seems a very cavalier way to treat those who had been actively discussing whether a website and possibly an associated information resource/advocacy org might be viably developed out of the forum.)

Suzy

 

[Merry]

A veritable polymath, Merry, and now it seems, an advocacy organization "Director".



Well, you can read Ger's comments for yourself:

http://www.mecfsforums.com/index.php/topic,548.0.html

BTW, a post at the end of that thread by "Since" calling me a "troublemaker" was subsequently removed. Then the thread was locked.

If Gerwyn is Gethin, I hope he is polishing his people skills.

Suzy

Thanks for the information, Suzy.

I tried the link but got a message that said either the post was missing or I am not authorized to see it.

 

[Dx Revision Watch]

Thanks for the information, Suzy.

I tried the link but got a message that said either the post was missing or I am not authorized to see it.

Yes, the thread was moved to one of the forums that needs viewers to be registered to view it, sorry, I had forgotten that it was no longer a public thread, accessible to all, with or without a membership.

Suzy

 

[insearchof]

Hi Suzy

IMEA are calling, in their Mission Statement, for the "elimination" of the term "CFS" but appear to be planning to lobby CDC for CFS to be coded alongside PVFS and ME in ICD-10-CM. Why cannot at least one of the several involved see this?

That did not escape my attention Suzy. It appears that the explanation for these inconsistencies might lie in a telling goal, where they call for CFS to be renamed ME.

Is it possible, that in the interim ( well before this proposal has even been considered and accepted) they have, either consciously or unconsciously, substituted the term ME for what would otherwise be CFS? This is the only thing that makes sence out of the non sensical.

ME is not and never has been CFS on the basis of current and respective medical definitions. The distinctive medical feature or key diagnostic criteria for ME as repeatedly stated in classical medical literature and studied extensively in the UK and Canada, is evidence of central nervous system dysfunction. That is why, as you know, it appears at and is classified under chpt 6 of the ICDs. The distinctive medical feature of CFS as currently defined and used for research and diagnosis, is unremitting chronic fatigue of 6 months or more. This distinctive feature is, like ME's distinctive feature, used for the purposes of ICD classifications and that is why CFS cannot appear at chpt 6 or G 93.3 and will appear in the R listings in ICD 10 CM US! How hard is it to understand?

From my understanding the IMEA would do better to push for a re evaluation of the diagnostic criteria of CFS, in particular that the key criteria be acknowledged as something other than chronic unremitting fatigue ....maybe immune dysfunction anything other than chronic unremitting fatigue of 6 months or more: the key feature of the illness. Then that new key distinguishing feature might be used to give CFS a classification other than the one that it will get in ICD 10. Its really about definitions and classification/codes. You simply cannot push a square peg into a round hole, no matter how long and how hard you try!

But to go in to the CDC wearing an ME label and arguing for CFS as it is currently defined and understood, to be assigned to an ICD classification like Chp 6 .....well they might as well go in wearing fancy dress and whistling Dixie, because at least that way the CDC might be able to otherwise justify the amusement they are sure to have at their expense, later.

 

[justy]

Sorry i havent been able to read all of this thread, but from my point of view, changing the name to M.E isnt going to help anyway. In the U.K it is still refered to as M.E, but look at the way we are treated. Iys not going to make any difference at all. In the U.K people just see M.E as a malingerers or hypochondriacs illness.

 

[In Vitro Infidelium]

it is difficult to find any information about those who have created this new international advocacy organisation, which is already announcing that it is in the process of setting up a meeting with Dr Unger of the CDC and calling for topics for potential discussion.

Is it actually likely that a senior figure at the CDC is going to meet with anyone who has no representiative or professional credentials ? If representation or advocacy is being claimed then at the very least one would expect the CDC to check the level of support that the organisation seeking discussions, actually has. I would have thought a published IRS Form 990 demonstrating an appropriate level of support from public sources would be the minimum that the CDC would require, after all any one can claim anything and there must be thousands of people who would like to discuss their particular cause with CDC officials.

My guess is that whoever handles Elizabeth Unger's diary, looked at this request and the first phone call they made was to the CAA to ask who the IMEA are, if that is the case I think one can assume that the IMEA did not get a first call supportive response. The trouble with setting out to supplant existing representation (no matter how poor that may be) is that the 'new gals/guys on the block' almost always need some support from the old guard to be able to get a foot hold.

Sorry i havent been able to read all of this thread, but from my point of view, changing the name to M.E isnt going to help anyway. In the U.K it is still refered to as M.E, but look at the way we are treated. Iys not going to make any difference at all. In the U.K people just see M.E as a malingerers or hypochondriacs illness.

Absolutely, although NICE and MRC are now using the term CFS/M.E. All the published criteria -Canada, US and UK all use the term CFS and there is no broad movement amongst clinicians to change the designation; for better or worse CFS is now a broadly accepted nomenclature which is unlikely to be changed until there is some clinical evidence that would support a name change. The name really is a distraction - (teenagers in bedrooms dreaming up names for bands that will never play outside of a garage).

IVI

 

[insearchof]

Hi Justy

And you know why Justy? ME as historically defined and understood well in your country, mysteriously became lost in the adoption of a newly coined syndrome, directly imported from the CDC USA, called CFS.

 

[Dx Revision Watch]

Is it actually likely that a senior figure at the CDC is going to meet with anyone who has no representiative or professional credentials ? If representation or advocacy is being claimed then at the very least one would expect the CDC to check the level of support that the organisation seeking discussions, actually has. I would have thought a published IRS Form 990 demonstrating an appropriate level of support from public sources would be the minimum that the CDC would require, after all any one can claim anything and there must be thousands of people who would like to discuss their particular cause with CDC officials.

My guess is that whoever handles Elizabeth Unger's diary, looked at this request and the first phone call they made was to the CAA to ask who the IMEA are, if that is the case I think one can assume that the IMEA did not get a first call supportive response. The trouble with setting out to supplant existing representation (no matter how poor that may be) is that the 'new gals/guys on the block' almost always need some support from the old guard to be able to get a foot hold.

IVI

The notice they circulated on 22 March states:

The International ME Association (IMEA) is in the process of scheduling
a meeting with Dr. Elizabeth Unger at the CDC and is soliciting patient
input regarding questions to be answered during the meeting.

...in the process

My reading of this was that they have yet to secure a meeting.

So yes, it is by no means certain that a rep from IMEA will secure any time with Dr Unger either in a dedicated meeting or as part of any other scheduled meeting where representatives of other advocacy groups and established advocates would be participating.

Suzy

 

[Bob]

Sorry i havent been able to read all of this thread, but from my point of view, changing the name to M.E isnt going to help anyway. In the U.K it is still refered to as M.E, but look at the way we are treated. Iys not going to make any difference at all. In the U.K people just see M.E as a malingerers or hypochondriacs illness.

For practical purposes, the UK government and the NHS officially refer to it as 'CFS/ME.' (It's not referred to as 'ME' by the NHS.)
In my experience, patients tend to call it ME, and doctors tend to call it CFS.
I don't quite understand how the UK government has managed to combine two different ICD classifications into one single disease entity.
By combining both CFS and ME into a single entity, I think it makes it easier for them to promote psychological therapies as the primary treatment.

 

[insearchof]

For practical purposes, the UK government and the NHS officially refer to it as 'CFS/ME.' (It's not referred to as 'ME' by the NHS.)
In my experience, patients tend to call it ME, and doctors tend to call it CFS.
I don't quite understand how the UK government has managed to combine two different ICD classifications into one single disease entity.

Bob,


Probably the same way as they denied the existence of ME by referring to it as CFS/ME

The only people who use ICDs are medical specialists in this country, not GP's. I don't know about the UK. My point being that few people investigate the ICDs and with good reason as they are not easy to understand and when trying to study them online, there are many different versions and missing bits and inaccuracies. Even the WHO site was not without its problems for research and reading purposes.

So one possible answer to your question is general ignorance has allowed them to refer to both as though they were one and the same, but I am sure Suzy has greater insight on the matter as it relates to the UK, than I do.