MEAdvocacy.org call for rejection of the IOM report in Washington Post blog

[Sasha]

http://www.washingtonpost.com/news/...ronic-fatigue-syndrome-report-doesnt-help-us/

Comments are possible. Two there already.

 

[Kati]

Horrible PR. I am not sure what else to say. This is the last thing we need, to get people especially in DC, even more confused.

 

[Esther12]

I've not read the IOM report, so cannot really comment on this, but I thought that this was perhaps a poor PR move:

The new name, Systemic Exertional Intolerance Disease or SEID, also is causing controversy. It still does not adequately convey the seriousness of the disease, again connoting that we are just lazy.

With these sorts of things, I think it's worth trying to avoid a 'lady doth protest too much, methinks' response, and the SEID label may not be ideal, but I think that it reflects an honest attempt to avoid a connotation of laziness.

 

[Bob]

Well, it adds to the public discussion. The more we get our illness into mainstream public awareness, the better, I think.

But I think this line of advocacy is going to be fruitless, partly because the community is split, and partly because the govt agencies are not going to suddenly tear up the IOM report and declare that they wasted $1m and the IOM were incompetent.

I think it would be a more canny advocacy move to accept the IOM report (in relation to a disease named SEID) and to advocate that ME should be defined separately by the ICC, if they want the ICC to be used.

 

[snowathlete]

This is very naughty of the ME Advocacy group.

"Despite the wishes of the ME community..."
"MEAdvocacy.org, an organization that represents patients..."

To made statements like this without making clear that they mean "ME" as in a portion of people that previously had the labels ME, CFS, or ME/CFS, is unacceptable.

Although it isn't really possible to measure, I find it highly unlikely that you are even representative of the majority of patients. Therefore, this minority view, though valid, should not be presented as if it is a majority view.

Not everyone who still considers themselves to have "ME", or to have previously had the label "ME" are represented by this advocacy group. So it isn't ok what I'm seeing here.

If this group fails to ensure the weight of their views are accurately expressed in future, then patients may feel they have no choice but to start actively opposing this advocacy group to ensure their views are not steamrollered. That would be damaging for the community as a whole, and I hope it can be avoided, but obviously allowing misleading articles like this to continue is also damaging to the community.

If you are involved in this advocacy group then please take this matter seriously and think about how to get across the views of your group without misleading everyone into thinking you are expressing the opinions of everyone. Consider how you would feel if people who do like the IOM report and the new name were to publish something in a paper praising it, and at the same time giving the impression that they represent the whole community (including you).

 

[snowathlete]

http://www.washingtonpost.com/news/...ronic-fatigue-syndrome-report-doesnt-help-us/

Comments are possible. Two there already.

I tried registering so that I can comment, but still waiting for activation email. Anyone else?

 

[barbc56]

It looks like this is an opinion piece. How difficult would it be to have a rebuttal posted?

I'm rather surprised that The New York Post published this.

I just find the article disingenuous and certainly not helping our image.



Barb

 

[helperofearth123]

I made a comment.

 

[Bob]

It's expected that advocacy groups will promote their view point and their supporters' interests, but with such a split in the community, it seems sensible to take some time to gather views about this, and to discuss (with the wider community) possible ways forward that can accommodate the wider community's needs and wishes. The community is split on this issue, and I think provoking hostility from a significant section of the community isn't going to be beneficial for any advocacy efforts in the long term. We're only going to effect change if we are united, and can support each other's needs and wishes. We've been trying to come to some sort of understanding and accommodation of each other's perspectives on the Yes vs No thread.

 

[Bob]

I can't work out if this piece will be published in the newspaper, or if it's an online blog only?

 

[snowathlete]

It looks like this is an opinion piece. How difficult would it be to have a rebuttal posted?

I'm rather surprised that The New York Post published this.

I just find the article disingenuous and certainly not helping our image.



Barb

Washington post.
There was another article, a good one, in the New York Post.

 

[WillBeatCFS]

Please read the article a bit more carefully, please. It does not say the entire community has a single opinion on anything. Indeed, a good half or more is simply history and the views of both sides are presented (both are brief because the article was brief).

The first thing it does say is that HHS went ahead with the IOM contract despite a great deal of dissent from those in the ME community. It is referring to the experts letter, advocates letter, petition for CCC/against IOM contract, and statements at/by CFSAC. This reflected a clear wish that HHS adopt CCC not contract for another disease definition.

It also specifically says that there are patients who praise the report for noting PEM as a major symptom. "Advocates and patients who welcome the new criteria correctly argue..." It also says the name is controversial which, by definition, means there are two sides of the issue. The position of those who accept it is obvious (they accept it) but the position of those who do not needs the question of, "Why?" answered to make sense.

It does not claim for speak for all patients but for some. Is there any doubt some in the community do not find this report adequate? It goes on to detail the parts of the definition many find lacking and why. Again, the views of those who like the report are self-evident.

Finally, it is very clear that it is the position that the report should be rejected is that of of MEadvocacy.org not that of everyone who is potentially involved. And, by the way, the report CAN be rejected by Secretary Burwell. The report on Gulf War Illness was also controversial and was ultimately rejected.

 

[Bob]

@WillBeatCFS, it is true that "Despite the wishes of the ME community", doesn't necessarily mean the same as "Despite the wishes of the whole ME community", but it does appear to be saying that it represents the wishes of the whole community. And the article doesn't seem as generally balanced as you make it out to be. In any case, there is still the issue of whether it's sensible to advocate on an issue that has split the community, without trying to accommodate the needs and wishes of a wider section of the entire community, or at least discussing the issue with the wider community before making public statements in national media outlets. I'm sure this advocacy group isn't unique in doing this, but I thought it was set up as a grass-roots organisation to represent patients, so I expected something a bit more inclusive, and less divisive.

 

[Nielk]

It's expected that advocacy groups will promote their view point and their supporters' interests, but with such a split in the community, it seems sensible to take some time to gather views about this, and to discuss (with the wider community) possible ways forward that can accommodate the wider community's needs and wishes. The community is split on this issue, and I think provoking hostility from a significant section of the community (especially by purporting to represent those with opposing views) isn't going to be beneficial for any advocacy efforts in the long term. We're only going to effect change if we are united, and can support each other's needs and wishes. We've been trying to come to some sort of understanding and accommodation of each other's perspectives on the Yes vs No thread.

You cannot say that I have not tried. I have put (too much, at my health expense_ effort in trying to convey our groups beliefs only to be met by anger here. There has been no effort to try to understand our viewpoint. There has not been any reaching out to us. Try for a minute to look at our point of view. We are not satisfied with the IOM criteria. We think the name is belittling. We do not think that it represents ME. We don't think that this will help us to move forward. We do not want GPs diagnosing or caring for us. The IOM report states no testing to be done. GP's will not run any of the specialised testing such as viral titers to see if anti virals might help. No nk cell function will be tested. etc.

We need specialist who are trained to care for our very complicated multi system symptoms.

So, what do you expect us to do? Just accept the report, criteria and name and climb back into our darkrooms never to be heard again?

 

[Sasha]

It also specifically says that there are patients who praise the report for noting PEM as a major symptom. "Advocates and patients who welcome the new criteria correctly argue..."

In full, it says:

At first glance, the new IOM report gives the impression that the committee of eight non-experts and seven experts produced a solid clinical definition of this disabling disease. Advocates and patients who welcome the new criteria correctly argue that the committee got it right by including the hallmark defining symptom of post exertional malaise (or collapse). Upon closer inspection, however, there are serious flaws.

This to me implies that "[a]dvocates and patients who welcome the new criteria" failed to give the report "closer inspection" and therefore failed to notice the "serious flaws".

I don't think that's a fair representation of those patients' opinions.

It does not claim for speak for all patients but for some [...] it is very clear that it is the position that the report should be rejected is that of of MEadvocacy.org not that of everyone who is potentially involved.

I don't think that the call for the IOM report to be rejected necessarily even represents the views of MEAdvocacy.org, if by that you mean the membership as well as its committee. MEAdvocacy haven't surveyed their members since the IOM report came out and don't know their current views:

http://forums.phoenixrising.me/inde...or-continued-support.35804/page-2#post-564017

I don't think it's a reasonable assumption that a lot of members won't have changed their minds in the light of the report. A lot of people expected it to be terrible and actually regard it as pretty strong.

A couple of people on the thread I just linked to already have said that they donated to MEAdvocacy when it was protesting the IOM process but having now seen the report, they like it and don't approve of MEAdvocacy's stance in calling for the report's rejection.

 

[Bob]

You cannot say that I have not tried. I have put (too much, at my health expense_ effort in trying to convey our groups beliefs only to be met by anger here. There has been no effort to try to understand our viewpoint. There has not been any reaching out to us. Try for a minute to look at our point of view. We are not satisfied with the IOM criteria. We think the name is belittling. We do not think that it represents ME. We don't think that this will help us to move forward. We do not want GPs diagnosing or caring for us. The IOM report states no testing to be done. GP's will not run any of the specialised testing such as viral titers to see if anti virals might help. No nk cell function will be tested. etc.

We need specialist who are trained to care for our very complicated multi system symptoms.

So, what do you expect us to do? Just accept the report, criteria and name and climb back into our darkrooms never to be heard again?

I didn't know you were part of the advocacy group, Nielk. I didn't mean my comments as a dig at you personally, and I didn't mean to cause you more frustration.

I very much respect and appreciate your engagement on this forum, Nielk, and I appreciate that you've had a hard time here since the report was published, and that it's been a struggle for you. But it's been frustrating for all sides of the debate, with everyone feeling rather embattled. I hope that you'll also accept that I've made an effort to meet you half way, and to encourage us all to listen to each other.

There's no easy answers. There are differing opinions. My complaint is not that this organisation is promoting its views, but that (beyond our narrow discussions on this forum) there has been no wider attempt to take time to find a way forward for the whole community. (And I'm sure that both sides of the debate have a part to play in this.)

I actually agree with most (everything?) of what you've said in the post that I've quoted. And I think you might get a lot of support if you were to advocate for specific points like these. But if the IOM recommendations were to be disregarded because of advocacy efforts, and Fukuda were to remain in place, then I can imagine an uproar will take place. So, I'm asking for more nuanced or better targeted advocacy.

If the newspaper letter had argued for the points that you've argued for, in the quote above, then I think that would probably have been acceptable for most of the community. And I personally think it would have been a better advocacy effort. (Although, I accept that it's difficult to write something that will be accepted for publication, so detailed wish lists couldn't have been included.)

I take your point about the GWS recommendations being rejected, but I honestly don't believe that your advocacy efforts will bear fruit while a significant proportion of the community are strongly in favour of the new criteria. I suppose you must do things in your own way seeing as you feel so strongly, but I think others will advocate equally in the opposite direction.

Basically, the community is split, and I'd like our community to have a discussion before we make decisions. It might take time. But if they put the IOM's recommendations in place now, that doesn't stop you from continuing to advocate for the ICC (instead of, or to be used alongside the SEID criteria), or for other specific outcomes, including outcomes that we can all buy into such as advocating for a network of specialist clinics or centres of excellence, and NK cell activity testing, etc etc. (We could all support advocacy efforts such as these, and they wouldn't be divisive.)

 

[Nielk]

I didn't know you were part of the advocacy group, Nielk. I didn't mean my comments as a dig at you personally, and I didn't mean to cause you more frustration.

Yes. I am a member of the ME Advocacy Org. I'm sorry if I didn't make this clear.

I very much respect and appreciate your engagement on this forum, Nielk, and I appreciate that you've had a hard time here since the report was published, and that it's been a struggle for you. But it's been frustrating for all sides of the debate, with everyone feeling rather embattled. I hope that you'll also accept that I've made an effort to meet you half way, and to encourage us all to listen to each other.

I appreciate your understanding and fairness.

There's no easy answers. There are differing opinions. My complaint is not that this organisation is promoting its views, but that (beyond our narrow discussions on this forum) there has been no wider attempt to take time to find a way forward for the whole community. (And I'm sure that both sides of the debate have a part to play in this.)

I agree that there is no easy answer but, this should have not come as a surprise. We have said all along that we do not want government control of setting criteria or a name for our disease. Other diseases get defined and named by the medical community - here in the US, not the government!

You might argue that this is IOM and not the government but it is the government who secretly contracted and sponsored the IOM. The IOM might state that they are independent but, how independent are they when they rely on the government is their biggest sponsor? The charge and parameters were set by the government. We had many articles here on PR outlining all these problems. The fact that it was evidence bases. The fact that they were specifically charged to write easy, simple criteria so that any GP or nurse can diagnose. All this has been discussed here on PR.

Since the IOM report came out, all I hear here on PR is praise for it. Whenever I pointed out any issues/problems with it I was shut out. Every article that came out in favor oh the IOM, was praised here. Now that an article came out showing the other point of view, there has been furor here. This is not a climate for fair discussion.

I actually agree with most (everything?) of what you've said in the post that I've quoted. And I think you might get a lot of support if you were to advocate for specific points like these. But if the IOM recommendations were to be disregarded because of advocacy efforts, and Fukuda were to remain in place, then I can imagine an uproar will take place. So, I'm asking for more nuanced or better targeted advocacy.

This is a quote from the ME Advocacy Orgs. statement blog: http://www.meadvocacy.org/now_is_the_time_to_stand_up_for_m_e

After much consideration of the IOM report, and listening to the ME community, we have decided that our plan going forward is to stay the course with our original goals and focus on getting myalgic encephalomyelitis (ME) officially recognized as its own distinct disease (separate from chronic fatigue syndrome/systemic exertion intolerance disease (CFS/SEID)), with a true ME definition, (the International Consensus Criteria or better), under the ICD-10-CM code G93.3. Note that we are no longer asking for the Canadian Consensus Criteria - we believe we should be advocating for the most current and best definition that is available.

We are also advocating for the use of the International Consensus Primer - already in use by doctors across the country as a working set of clinical guidelines to diagnose and treat ME patients.

Over time, it has become clearer that there are major flaws with the IOM report, such as not including pain in the criteria, and not excluding other diseases, which creates a disastrously loose definition, just like the 1994 Fukuda-CFS criteria. In addition, while the compulsory symptom of post exertional malaise (PEM) is a plus, we don’t have confidence that general practitioners unfamiliar with the disease will be able to diagnose post exertional malaise (PEM) correctly. They may instead confuse PEM with fatigue, resulting in the over-diagnosis of SEID.

If the newspaper letter had argued for the points that you've argued for, in the quote above, then I think that would probably have been acceptable for most of the community. And I personally think it would have been a better advocacy effort. (Although, I accept that it's difficult to write something that will be accepted for publication, so detailed wish lists couldn't have been included.)

We were very limited in the amount of words allowed while trying to convey so much that we wanted to say.

Basically, the community is split, and I'd like our community to have a discussion before we make decisions. It might take time. But if they put the IOM's recommendations in place now, that doesn't stop you from continuing to advocate for the ICC (instead of, or to be used alongside the SEID criteria), or for other specific outcomes, including outcomes that we can all buy into such as advocating for a network of specialist clinics or centres of excellence, and NK cell activity testing, etc etc. (We could all support advocacy efforts such as these, and they wouldn't be divisive.)

Agreed.

 

[Bob]

Since the IOM report came out, all I hear here on PR is praise for it. Whenever I pointed out any issues/problems with it I was shut out. Every article that came out in favor oh the IOM, was praised here. Now that an article came out showing the other point of view, there has been furor here. This is not a climate for fair discussion.

I know you've felt embattled, but it's not been an orchestrated campaign against you or your point of view. It's just been the case that there are a number of individuals on this forum who tend to support the new recommendations, or who consider them to be a positive step in the right direction. And if they all respond to you at once, then obviously it's not easy for you.

 

[Bob]

This is a quote from the ME Advocacy Orgs. statement blog: http://www.meadvocacy.org/now_is_the_time_to_stand_up_for_m_e

After much consideration of the IOM report, and listening to the ME community, we have decided that our plan going forward is to stay the course with our original goals and focus on getting myalgic encephalomyelitis (ME) officially recognized as its own distinct disease (separate from chronic fatigue syndrome/systemic exertion intolerance disease (CFS/SEID)), with a true ME definition, (the International Consensus Criteria or better), under the ICD-10-CM code G93.3. Note that we are no longer asking for the Canadian Consensus Criteria - we believe we should be advocating for the most current and best definition that is available.

We are also advocating for the use of the International Consensus Primer - already in use by doctors across the country as a working set of clinical guidelines to diagnose and treat ME patients.

Over time, it has become clearer that there are major flaws with the IOM report, such as not including pain in the criteria, and not excluding other diseases, which creates a disastrously loose definition, just like the 1994 Fukuda-CFS criteria. In addition, while the compulsory symptom of post exertional malaise (PEM) is a plus, we don’t have confidence that general practitioners unfamiliar with the disease will be able to diagnose post exertional malaise (PEM) correctly. They may instead confuse PEM with fatigue, resulting in the over-diagnosis of SEID.

Thanks Nielk. I can't speak for anyone else, and I'm not trying to tell you what to do, but if you were to decide to accept that the IOM recommendations would be an improvement for 'CFS' patients and then advocate for the use of the ICC as separate criteria specifically for 'ME', then I wouldn't have any objections, from a personal perspective. The problem that I have is that I consider the IOM criteria to be a vast improvement on the status quo, and so I don't want them rejected outright. But I do see that there could be specific improvements, and I'd rather advocacy efforts were directed towards these specific improvements. But that's just my opinion.

 

[Ecoclimber]

I believe this is a major PR catastrophe for the patients further dividing an already fractured community. If you listened to the IOM panel the other day, the chair mentioned on question after question concerning the implementation of the guidelines, research funding, treatment protocols, changing the CDC website toolkit, etc. They were only chartered to do a certain task.They have no authority for anything else, period!! They have no authority to require the implementation of anything within this report. They have no authority requiring agencies to adopt this report. It was embarrasing to me to say the least, listening to one 'patient advocate' after another asking those type of questions with the IOM. Didn't they read the IOM charter before hand...Ai yi yi? The IOM has no authority to fund research or order Ampligen trials, or set policy of blood donors. I would have asked this question: given the previous exclusions under Fuduka, CCC concerning psychological illnesses, and given the fact patients can have comorbid conditions, what safeguards are built into the criteria to prevent phycisians from mislableing patients with a psychosomatic disorder?

This whole brouhaha is nothing but a tempest in a teacup. This report means nothing until the NIH decides whether to accept it, change it or totally discard it! They discarded 8 previous IOM reports on the Gulf War Veterans. Futhermore, the name will be changed in a few years anyway if this report is accepted. The IOM report is not the final declarative statement on this illness. It is far from that. It is only a report. This report and the guidelines can be totally trashed by the NIH.

So why doesn't everyone take a deep cleansing breath and wait to find out what the NIH has decided. Remember there is the P2P report to be released by the NIH. That is one everyone should be concern with.

I find it interesting concerning this do or die attitude of naming it ME. It's not a good name. Most people can't spell nor pronounce the name. Notice the IOM PR person trying to pronounce the word at the beginning of the meeting. There is no medical/scientific research that clearly indicates that ME/CFS is the same as ME. ME is designated in the UK as ME but is treated as a pychosomatic disorder. So changing it to suit those in the UK is meaningless if the scientific research does not support it at this time. It doesn't mean that within 5 years research will not be able to but until that time, ME needs to be set aside for now.

Patients fail to realize there are two criteria being proposed and are confusing one with the other. On the research side, criteria must exclude any and all patients who have been diagnosed with a psychiatric,psychosomatic,psychogenic disorders period. Any prior history of mental, emotional or psychological disorders must be excluded from any and all ME/CFS (SEID) research cohorts.

On the clinician's side, you cannot have that exclusion. Otherwise, patients with comorbidity issues of a psychological nature and ME/CFS would be excluded from being treated by physicians for one or the other of their conditions. This is where a clear line of demarcation is required. Unfortuately, ME/CFS does not have any biomarkers other than for PEM. Every condition mentioned by the ME folks whether MRI's on brain inflamation, high cytokines, etc can also indicate psychiatric illnesses as well from a medical research standpoint. There is a strong case for physicians ignoring the guidines and slipping everything over into the psych side where we will end up back to square one.This is why I am interested is the NIH's treatment protocol for this illness. I am also interested on the lab tests required to separate this disease from a purely psychosomatic disorder. If there are no additional testing for PEM, nor further lab tests beyond the basic CBC and Metrobolic panels, then I would be opposed to it.

The couraging news that I take away from this report are these three significant aspects. I find illuminating the IOM strong stance against considering ME/CFS as any sort of psychosomatic illness of any type, it is considered a disease and that PEM differentiates it from other known diseases or illnesses. Validation of PEM gets rid of PACE and GET for treatment options.

The bottom line the patient community must realize is the stark reality that they don't have any clout or power to make the NIH do anything it doesn't want to do. The NIH will determine the final outcome on this. It would be best IMHO, if everyone should just chill out, tone down the rhetoric, stop attacking each other, stop reading more into things or taking things out of context, stop the conspiracy theories and wait to determine what the final NIH policy will be. Please don't attack any of the ME/CFS researchers concerning this report. You could lose the very few that are willing to help this patient community.