International ME Association Update

[Ana]

NEW: Update- CDC Response to Patient Questions, see http://www.imeassoc.com/CDC_meeting__update.html

 

[barbc56]

Isn't this the group that are behind the mecfs forum where most of the member's were so rude, they were kicked off this board?

I find it rather arrogant putting a post here.

I agree with a lot of what they say, but after going to that forum, I will have nothing to do with the IMEA. It's a pity really how much bad PR they have given to ME.

IMHO

 

[Merry]

Isn't this the group that are behind the mecfs forum where most of the member's were so rude, they were kicked off this board?

I find it rather arrogant putting a post here.

I agree with a lot of what they say, but after going to that forum, I will have nothing to do with the IMEA. It's a pity really how much bad PR they have given to ME.

IMHO

I agree, barbc56. Thanks for taking the lead here.

 

[Christopher]

I agree, barbc56. Thanks for taking the lead here.

Disagree here.

 

[Wayne]

I will have nothing to do with the IMEA. It's a pity really how much bad PR they have given to ME.

Couldn't agree more barbc; thanks for your comments.

 

[liquid sky]

Isn't this the group that are behind the mecfs forum where most of the member's were so rude, they were kicked off this board?

I find it rather arrogant putting a post here.

I agree with a lot of what they say, but after going to that forum, I will have nothing to do with the IMEA. It's a pity really how much bad PR they have given to ME.

IMHO

Totally disagree. I like the IMEA. The subjects discussed sound good too. Looking forward to more info from the meeting.

 

[markmc20001]

Isn't this the group that are behind the mecfs forum where most of the member's were so rude, they were kicked off this board?

I find it rather arrogant putting a post here.

I agree with a lot of what they say, but after going to that forum, I will have nothing to do with the IMEA. It's a pity really how much bad PR they have given to ME.

IMHO

I agree with much of what IMEA says too.

That's a pretty strong statement to say "where most of the members were so rude". MECFSFORUMS has hundreds of members!!

I try not and judge an advocacy group by one or frustrated patients on a forum unrelated to the IMEA.

I know I get frustrated at times when patients have to deal with articles form Simon Wessley or William Reeves suggesting that ME is a psychological disease. Or worse yet, when WPI testing protocols are completely ignored and it is time to leave XMRV all behind.

MECFSFORUMS seems like they are all business and talk mostly about science which doesn't give many opportunities for the average patient like myself add anything that doesn't get into the nuts and bolts of HGRV's.

I'm interested in getting on with treatments for HGRV's before I'm too old to have a life.

If one or two people bark on a forum occasionally when the science is constantly ignored, I can't really blame them.

 

[justinreilly]

I like what IMEA has done so far.

I personally have never been talked to in a way i didn't like on mecfsforums.com, but sure have here, especially from Cort and other admins. I can see how it's not for everyone though. there is a lot of science which i've given up on cause i don't have the brainpower and understanding of it. but there's plenty going on in the advocacy and news sections that isn't sciency. I have learned a lot there. They are 'rough around the edges' for sure and i can see how it's not everyone's cup of tea.

I really do disagree that these people are so rude that they got kicked off of here. It seems to me it was mostly an attempt by Cort to silence views he doesn't agree with. Cort certainly said plenty of things that were just as offensive or more so and broke the forum rules as much (and he wrote the forum rules as far as i know).

as to the IMEA/CDC meeting:

Dana Brimmer, an outside consultant to CDC met with IMEA on behalf of CDC. I think this says it all:

Dana J. Brimmer, PhD, MPH, is a behavioral scientist...She leads the chronic fatigue provider education project.

According to IMEA, CDC said it has only met with CAA, PANDORA and them. They claim none of the 10 or so other orgs that said they wanted to meet with themwill return their calls. CDC says it won't answer any of the questions posed to it until they receive questions from every group, which doesn't make much sense to me. I really wish that the other orgs were following up, if it is true that the delay rests with them (we know CDC is often untruthful).

This all seems to me like just another delay tactic by CDC. They know full well what their crimes are and they haven't done anything to change them (other than Unger not being as publicly dismissive as Reeves). They did them on purpose and they have been pointed out ad naseum to them by us.

Unger has said everything is hunky dory with the CDC "CFS" program (except they may look to tweak the Reeves criteria, but not throw it out) at a CFSAC meeting. Nothing substantive has changed from the Reeves days. That's the bottom line. Slow incremental improvements on their crimes in unacceptable.

 

[barbc56]

I guess I will just have to agree to disagree with some here.

Glad to see some people are speaking up. That's why I am not just lurking here anymore.

I was inspired by a blog that I read several days ago and the rest will be history.

 

[ixchelkali]

Personally, I'd just as soon stay away from the whole "I like them, I don't like them" theme. Okay, so some people like that forum and others don't. Can't we just leave it that if you don't like that forum, don't read it, and if you do like it, read it? If someone posts a link to a forum or blogger I don't like, I'm free to ignore it. But we are all patients together. I see nothing to be gained from tearing down one another's efforts. Don't we have enough people putting us down without adding to it?

Ana has shared something she found interesting. Can't we simply thank her? Or discuss the content of the post?

 

[Wayne]

Personally, I'd just as soon stay away from the whole "I like them, I don't like them" theme. Okay, so some people like that forum and others don't. Can't we just leave it that if you don't like that forum, don't read it, and if you do like it, read it? If someone posts a link to a forum or blogger I don't like, I'm free to ignore it. But we are all patients together. I see nothing to be gained from tearing down one another's efforts. Don't we have enough people putting us down without adding to it?

Ana has shared something she found interesting. Can't we simply thank her? Or discuss the content of the post?

Hi ixchelokali,

There's a lot of history here you may not be aware of. You may want to check out this thread started by Ana back in March of this year:

IMEA-New M.E. Association

It has over 200 posts, and illustrates quite well why so many here have anywhere from moderate to very serious misgivings about this group, the people who established it, what their intentions may be, and whether anybody with ME would want them to represent us. Many issues were raised; as I recall, Ana responded to none of them.

Personally, I'm not comfortable with this organization, and don't feel comfortable that they're setting themselves up as representing the ME community. I firmly believe that anybody who represents us should have at least a modicum of interpersonal skills. The people who created this group don't even meet that minimum standard IMO.

Wayne

 

[barbc56]

Personally, I'd just as soon stay away from the whole "I like them, I don't like them" theme. Okay, so some people like that forum and others don't. Can't we just leave it that if you don't like that forum, don't read it, and if you do like it, read it? If someone posts a link to a forum or blogger I don't like, I'm free to ignore it. But we are all patients together. I see nothing to be gained from tearing down one another's efforts. Don't we have enough people putting us down without adding to it?

Ana has shared something she found interesting. Can't we simply thank her? Or discuss the content of the post?

The points I am discussing do indeed have something to do with the content of Ana's post. This thread is about trying to put legitimacy into the IMEA and that is just a tacky ploy by those who just want to diss this forum.

There has been a backlash so strong that the real advocates for our condition are working twice as hard to undo the damage that has been done by the likes of the MECFS/IMEA.

I will not ignore what I think as a patient, a forum/association that I feel is harmful and giving a bad name to us all who have me/cfs.

My life is far too short to put up with these people.

 

[omegaman]

There has been a backlash so strong that the real advocates for our condition are working twice as hard to undo the damage that has been done by the likes of the MECFS/IMEA.

I will not ignore what I think as a patient, a forum/association that I feel is harmful and giving a bad name to us all who have me/cfs.

My life is far too short to put up with these people.

Hmm.. What damage?

So far what I have seen the IMEA do is.

1) Present a scientific analysis presenting arguements for the validity of HGRV's infecting human beings.

2) Taking any patients questions and asking them directly to the CDC.

3) advocating for the use of objective measures to be used in conjunction with the new ICC criteria and the Canadian critieria.

4) Advocating for people to vote in the Vivint contest.

5) nominating Dr. Grobstein to the CFSAC when most groups did not nominate anyone and initiating a fax campaign for patients who supported her nomination.

6) writing aticles and comentary against Simon Wessely and his Psychosomatic positions.

How in the world is any of this damaging?

 

[*GG*]

I guess I will just have to agree to disagree with some here.

Glad to see some people are speaking up. That's why I am not just lurking here anymore.

I was inspired by a blog that I read several days ago and the rest will be history.

What blog was this?

GG

 

[Dx Revision Watch]

OK, I'd ceased posting on these forums for a number of reasons, but today I am making an exception.

Those of you who have read the other thread following the launch of the "IMEA" will have noted that there had been concerns, at the time of the launch, about transparency and the identities of the "Directors" of the "IMEA".

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

There was confusion over whether UK "Director" "Gethin Price" was in fact "Gerwyn Morris" and if so, why was a "Director" of a new "international advocacy organisation" not being transparent about his identity?

There were ambiguities around some of the group's positions, for example, in "CEO", Louise Gunn's biography details, Ms Gunn had stated:

"...The other pressing issue is the USA's diagnostic manual, ICD-10CM. Though there is disagreement about the relationship of CFS and ME, the proposed reclassification of CFS to "R53.82 Chronic Fatigue, unspecified" cannot be allowed to happen. This change would also have ramifications for the WHO's ICD-11, and the world wide population with this disease."

One of the "Goals" within the IMEA's Mission Statement at the time was:

"Until science provides us with a better name, we recommend the use of the name "Myalgic Encephalomyelitis" (M.E.) for this illness and elimination of the term "Chronic Fatigue Syndrome" (CFS)"


As I noted earlier this year, there appeared to be a disparity between the call for:

"...elimination of the term "Chronic Fatigue Syndrome"

and the question for the CDC:

"Does the CDC believe that it is right to reclassify CFS in ICD-10CM? [under the R code chapter] And if no, what are they doing to actively stop the reclassification?


So just what was the IMEA's position on the long standing proposals for coding PVFS, ME and CFS for ICD-10-CM? For I did not see then and I do not see now how, on the one hand, IMEA could support the inclusion of CFS in Chapter 6, at G93.3, along with PVFS and ME (as it is in the Canadian ICD-10-CA) yet at the same time call for the elimination of the term "CFS".


I note today, that on a thread on ME-CFS Forums, two of the original "Directors" of the IMEA are strongly opposing the Coalition4ME/CFS's ICD-9-CM and ICD-10-CM initiative at yesterday's Coordination and Maintenance Committee meeting and that Mary Dimmock, who presented at the meeting, is defending the Coalition4ME/CFS's position on the ME-CFS Forum.

So it appears that the position of CEO, Ms Gunn, is no longer tenable or compatible with the position of at least two of the other "Directors" - Patricia Carter and Robyn Erland.


I've had a look at the IMEA website this morning.

http://www.imeassoc.com/Page_2.html

I note some changes.

The CEO, Ms Gunn, appears to be no longer listed as CEO, or listed at all.

Gethin Price also appears to be no longer listed.

Instead of a "CEO" and "Directors", the organization now has "Administrators".

The "Administrators" are listed as


Keith Baker, United States

Patricia Carter, United States

Lilly Cooper, Nicaragua

Robyn Erland, United States



So, no longer a UK contingent and not very international, either, for another "Director" from outside the US also appears to have been dispatched or has since walked away.

When supporting new "organizations" that are claiming a mandate to represent international patients and undertake "international" advocacy, it's not a bad idea to establish the following:

Who are the players?
What are their backgrounds and their previous history in advocacy?

How professionally do they conduct themselves in private and in public arenas?

How is the organization constituted?
How does the organization consult with its constituency of interest?

How stable is the organization?

What are the organization's positions and policies and how stable are their positions?


From what I've seen so far, this organization needs to take a good hard, critical look at how it conducts itself as an organization and importantly, how the individuals who make up the organization conduct themselves on public forums.

Since March, we have already seen a significant change in the make up of those who are behind the organization and some volte faces in positions.

And who is the mysterious Ana who pops up every now and then to post IMEA related links?

http://forums.phoenixrising.me/show...E.-Association&p=162826&viewfull=1#post162826


Is Ana former lawyer, Patricia Carter, one of the original "Directors" now "Administrators" of IMEA (who is also the Administrator of ME-CFS Forum) or one of the other "Directors/Administrators"?

Would "Ana" like to confirm, please, what her relationship to the IMEA is and why she does not respond to queries and questions raised on this board?

By the way, some questions I put to former "Director" Ms Louise Gunn in March, this year, around the organization's understanding of ICD-10-CM, ICD-10 and the international ICD Revision Steering Group responsible for the development of ICD-11, remain unanswered, six months later.


Suzy Chapman

 

[Merry]

Thank you so much, Suzy.

 

[floydguy]

OK, I'd ceased posting on these forums for a number of reasons, but today I am making an exception.

Those of you who have read the other thread following the launch of the "IMEA" will have noted that there had been concerns, at the time of the launch, about transparency and the identities of the "Directors" of the "IMEA".

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

There was confusion over whether UK "Director" "Gethin Price" was in fact "Gerwyn Morris" and if so, why was a "Director" of a new "international advocacy organisation" not being transparent about his identity?

There were ambiguities around some of the group's positions, for example, in "CEO", Louise Gunn's biography details, Ms Gunn had stated:

"...The other pressing issue is the USA's diagnostic manual, ICD-10CM. Though there is disagreement about the relationship of CFS and ME, the proposed reclassification of CFS to "R53.82 Chronic Fatigue, unspecified" cannot be allowed to happen. This change would also have ramifications for the WHO's ICD-11, and the world wide population with this disease."

One of the "Goals" within the IMEA's Mission Statement at the time was:

"Until science provides us with a better name, we recommend the use of the name "Myalgic Encephalomyelitis" (M.E.) for this illness and elimination of the term "Chronic Fatigue Syndrome" (CFS)"


As I noted earlier this year, there appeared to be a disparity between the call for:

"...elimination of the term "Chronic Fatigue Syndrome"

and the question for the CDC:

"Does the CDC believe that it is right to reclassify CFS in ICD-10CM? [under the R code chapter] And if no, what are they doing to actively stop the reclassification?


So just what was the IMEA's position on the long standing proposals for coding PVFS, ME and CFS for ICD-10-CM? For I did not see then and I do not see now how, on the one hand, IMEA could support the inclusion of CFS in Chapter 6, at G93.3, along with PVFS and ME (as it is in the Canadian ICD-10-CA) yet at the same time call for the elimination of the term "CFS".


I note today, that on a thread on ME-CFS Forums, two of the original "Directors" of the IMEA are strongly opposing the Coalition4ME/CFS's ICD-9-CM and ICD-10-CM initiative at yesterday's Coordination and Maintenance Committee meeting and that Mary Dimmock, who presented at the meeting, is defending the Coalition4ME/CFS's position on the ME-CFS Forum.

So it appears that the position of CEO, Ms Gunn, is no longer tenable or compatible with the position of at least two of the other "Directors" - Patricia Carter and Robyn Erland.


I've had a look at the IMEA website this morning.

http://www.imeassoc.com/Page_2.html

I note some changes.

The CEO, Ms Gunn, appears to be no longer listed as CEO, or listed at all.

Gethin Price also appears to be no longer listed.

Instead of a "CEO" and "Directors", the organization now has "Administrators".

The "Administrators" are listed as


Keith Baker, United States

Patricia Carter, United States

Lilly Cooper, Nicaragua

Robyn Erland, United States



So, no longer a UK contingent and not very international, either, for another "Director" from outside the US also appears to have been dispatched or has since walked away.

When supporting new "organizations" that are claiming a mandate to represent international patients and undertake "international" advocacy, it's not a bad idea to establish the following:

Who are the players?
What are their backgrounds and their previous history in advocacy?

How professionally do they conduct themselves in private and in public arenas?

How is the organization constituted?
How does the organization consult with its constituency of interest?

How stable is the organization?

What are the organization's positions and policies and how stable are their positions?


From what I've seen so far, this organization needs to take a good hard, critical look at how it conducts itself as an organization and importantly, how the individuals who make up the organization conduct themselves on public forums.

Since March, we have already seen a significant change in the make up of those who are behind the organization and some volte faces in positions.

And who is the mysterious Ana who pops up every now and then to post IMEA related links?

http://forums.phoenixrising.me/show...E.-Association&p=162826&viewfull=1#post162826


Is Ana former lawyer, Patricia Carter, one of the original "Directors" now "Administrators" of IMEA (who is also the Administrator of ME-CFS Forum) or one of the other "Directors/Administrators"?

Would "Ana" like to confirm, please, what her relationship to the IMEA is and why she does not respond to queries and questions raised on this board?

By the way, some questions I put to former "Director" Ms Louise Gunn in March, this year, around the organization's understanding of ICD-10-CM, ICD-10 and the international ICD Revision Steering Group responsible for the development of ICD-11, remain unanswered, six months later.


Suzy Chapman

I see a lot of FUD being tossed about. Personally, I'd rather be represented by patients who are doing everything they can under difficult circumstances rather than highly paid "advocates" with ties to the CDC. The existing advocacy organizations have been extremely ineffective. A little competition might be helpful.

 

[Wayne]

And who is the mysterious Ana who pops up every now and then to post IMEA related links?

Thank you Suzy for shedding some light on some very important matters, including a number of important questions that remain unanswered. I find it rather unsettling that Ana still refuses to reveal who she is, and what her connection is to the IMEA. How can any organization have legitimacy if they won't be as transparent as they should?

From what I've seen so far, this organization needs to take a good hard, critical look at how it conducts itself as an organization and importantly, how the individuals who make up the organization conduct themselves on public forums.

Ditto!

 

[barbc56]

What blog was this?

GG

It was a blog about patient advocacy. Nothing to do with ME/CFS. I'll try to find it. I think it was the straw that broke the proverbial camel's back.

Suzy, thank you for the informative post. Very interesting.

Gerthin is indeed Gerwyn.

The infighting over there is such an awful situation and it makes one wonder how long the forum will last. I think the people who go over just to see what all the commotion is about aren't even returning. I don't. It's just too depressing.

Obviously I haven't been to the IMEA site for a while. We need to spread the word about this incredibly harmful organization.

Floydguy, yes I have been brainwashed by the CDC, Big Pharma, NHS, etc. I don't have the brainpower to resist them. I think you need to look in the mirror when talking about people being brainwashed or not using critical thinking skills.

 

[liquid sky]

As far as transparency from patient advocacy organizations goes, the recent hiding of the activity on changing the coding is quite enlightening. That was certainly not handled with transparency. The patients were not even consulted for months. The suggestions for changing the coding were already decided upon by then.

I agree Ana should reveal her relationship with IMEA, if she has one.

@ Barb, do you know that Gerthin is really Gerwyn or are you just guessing on that?