First IOM meeting scheduled - Jan 27-28

[Ember]

I agree with Justin that as a clinical entity, "CFS" needs to go and if there are other diseases inside of "CFS", they need to be investigated separately for the disease they are.

You're getting ahead of the experts. The International Consensus Panel writes, “As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”

 

[Delia]

Nothing in the expert's letter to Secretary Sebelius contradicts the position taken by the International Consensus Panel. Patients contradict the experts at their peril. A lack of consensus between patient groups and the scientific community opens the door to having a group such as the IOM committee make recommendations to resolve the controversy. Our strength lies in our willingness to support our experts.

But they aren't going against the experts letter. Even the experts knew not to drag this nomenclature into the argument at this point! That's what puts the ball into the HHS court immediately. Game over they won.

The peril is the scare tactics being used to draw a line in the sand on the nomenclature.

It is fighting the second round when we are ignoring round one which has to be won first in order to get to round two.

Chronic Fatigue Syndrome became a name specifically to define the ME outbreak! When Norway
Apologized to it's patients it apologized for chronic fatigue syndrome patients not ME. But ME advocates translated to what they wish for, not what it actually says!

99% of doctors and Americans have never heard of ME. We have to educate them over. By saying ME is a subset of CFS is madness. There's no such thing as CFS no matter how many studies were done. It's garbage.

By giving it any legitimacy it ensures that hundreds and thousands of people will continue to suffer from this travesty! Forever it seems as those who don't know what you know can't fly to DC they can't barely work and there are real class lines being formed that will crush this movement.

It hurts the great movement of people rising from their beds to fight! And shoots us in the foot preventing us from bringing more bodies to the cause because they do not even know about ME, PEM or the CCC or Anything!

It's like: this IOM has been Rosa Parks for this movement but now many members are changing it to light skinned blacks should sit up front. We don't give a shot about the darkies. (CFSers) who will be badly badly hurt, because they don't know about this! Leaving cfs as something real leaves them at the back of the bus. And does not help us light skinned ME-ers in any fu**ing way.

The great majority of people with MEcfs DON'T know what the smallest percentage do. There are hundreds of thousands fighting with their doctors who push them to exercise to have the doctor learn about GET because they think that will help them because regular exercise is killing them and their doctors are pushing the shit out of them and blaming them when they fail. Most Doctors don't even know about GET, ffs! And patients who don't know better think it makes sense, because at least it's not what they are being put through now.

That's how bad it is.

Here's how it has put me in peril right now:

Y'all pressured Jen Brea to change her video to say "ME is a subset of CFS" which is not what it said when I used it to finally educate my county caseworker this fall. He got injured and I have a new caseworker. So I went to send it this week and guess what? Now it puts doubt in their mind. more doubt I don't need. Well we dont knkw if she has ME, she looks like crazy-lazy CFS to me...

I need their help. I have no help and I'm bed bound!

It's not what her video said when I gave $25 out if my $630 month income.

I got in this to fight the IoM and win. Even tho I'm on the brink of homelessness. And need to be putting my time to save myself.

I know what I'm doing. I'm an experienced political strategist who has been very successful.

The only unsuccessful campaigns I've been a part of didn't listen to my strategy and did just what I said NOT to do. But it didn't matter to them-the losses truly didn't effect them as they already had what they needed. They could buy their way out of the consequences of failure. I can't.

This whole ME is a subset or whatever that leaves CFS as legitimate is the losing strategy and it stinks to high hell.

PS: cfs came from ThecUS and it has to be killed in the US by US strategies and means. Yes it was exported and done and will continue to do great damage internationally. But we have to kill it using US strategy.

 

[Andrew]

If people with ME-ICC are split off and we are in the ME-ICC group (which I am), we should not recommend that the remaining people be called CFS. If they have more symptoms than fatigue, then the CFS designation is no less of a curse to them than it is to us. We should not be pushing it on them. And if we do, we are no better than the people who try to stick the CFS name on us.

 

[Ember]

But they aren't going against the experts letter.... It is fighting the second round when we are ignoring round one which has to be won first in order to get to round two.... I got in this to fight the IoM and win.... The only unsuccessful campaigns I've been a part of didn't listen to my strategy and did just what I said NOT to do.

Please note that I wrote, “Those opposing the IOM study demand the interim adoption of the hybrid CCC (ME/CFS) definition now.” I've supported this position.

But others have chosen to engage with the IOM. So I ask, “How will those engaging the IOM study, set to consider recent scientific advances, address the scope of disease without demanding that ME patients be removed from the broader category of CFS?”

Do patients plan to endorse the ICC while simultaneously promoting a position that conflicts with the one articulated by the International Consensus Panel? Or do they plan to reject the ICC?

 

[Delia]

If people with ME-ICC are split off and we are in the ME-ICC group (which I am), we should not recommend that the remaining people be called CFS. If they have more symptoms than fatigue, then the CFS designation is no less of a curse to them than it is to us. We should not be pushing it on them. And if we do, we are no better than the people who try to stick the CFS name on us.

We are not sticking the name on them. That is all they know!

By sticking to the language of the experts letter: ME/CFS we can not only bring them over to the ME info they need, but also speak in a language that most people know and bridge them over to ME and thus the CFS can be Kicked to the curb. You are keeping it alive by legitimizing CFS as some thing real but other. It must not be legitimized in any way . And saying ME is a subset of something that's not real is damning them to live in CFS world forever and never getting out, because CFS will still exist. You leave an area of continued suspicion on patients. These are not people who have access to a dr who can diagnose them with ME!


By skipping that crucial step, we damn ourselves from becoming an actually powerful group with numbers that could get things done. That Could worry politicians. That Could get some leverage finally. That whoever we talk to in the media could understand. So strategically it's a horrible plan.

Humanity wise it's a horrible plan.

Medically it will be the same as always: those who have access to ME docs will have it afterwards and the rest will not.


CFS must be strategically discredited in every way possible. Only then can we drop it and drop it with celebration.

 

[Delia]

It's reaching for the ball you want and dropping the ball you NEED.

Which has always been the best way for oppressors to win.

 

[Delia]

If people with ME-ICC are split off and we are in the ME-ICC group (which I am), we should not recommend that the remaining people be called CFS. If they have more symptoms than fatigue, then the CFS designation is no less of a curse to them than it is to us. We should not be pushing it on them. And if we do, we are no better than the people who try to stick the CFS name on us.

Oh d'oh.

Sorry Andrew! I think I misread your post. I'm super sick.

I just, not only feel strongly about not prematurely ridding cfs until we can absolutely kill it, but I just got burned in a very significant way in my personal life by the pressure the ME only folks have put on advocates with powerful voices.

I want ME only too! I just differ greatly on how to get there. I agree. I find it cruel. It's foisting it on them as it has been foisted on us!

 

[Andrew]

@Delia

Thanks for seeing that. I am not opposing the expert combination. I think it's an important step. I am only saying that IF a split happens, the ME people should not decide what other people's illness should be called.

 

[Delia]

Please note that I wrote, “Those opposing the IOM study demand the interim adoption of the hybrid CCC (ME/CFS) definition now.” I've supported this position.

But others have chosen to engage with the IOM, So I ask, “How will those engaging the IOM study, set to consider recent scientific advances, address the scope of disease without demanding that ME patients be removed from the broader category of CFS?”

Do patients plan to endorse the ICC while simultaneously promoting a position that conflicts with the one articulated by the International Consensus Panel? Or do the plan to reject the ICC?

Ember,

I too, have been whole heartedly in the non engagement strategy. I did believe this is one of those very rare political situations where non engagement is critical.

But, in seeing the horror show "experts" empaneled, I am glad for those who researched and wrote in to oppose them with evidence to support their opposition. That is now on the record and good in the long run.

I don't see that as in opposition to the no engagement position.

What I am talking about is boots on the ground strategy, and how the hardline ME only and CFS is a seperate condition or conditions position is going to kill us worse than the IoM.

I can't answer for those who chose engagement.

While it is always good to look ahead strategically and ask those questions, I believe a CCC vs ICC argument and the ME vs MEcfs argument is very detrimental to achieving the very first wins that must be made or those issues will never get to the table in order to be addressed. (By table, I mean a table we want and need vs the shitty IoM table they gave us).

 

[Delia]

@Delia

Thanks for seeing that. I am not opposing the expert combination. I think it's an important step. I am only saying that IF a split happens, the ME people should not decide what other people's illness should be called.

Yeah, sorry about that!

One of my trainers worked with MLK in the Southern Leadership Conference (and for God's sake I can't remember his name and I've been searching through pictures and articles since October to find him) but, he trained us to "get what you can that's as close to what you need!" Get that and move the next and next.

Otherwise You risk losing everything by going for perfection and perfection alone first thing out of the ring. It may be counterintuitive to people to not go for it all from the start.

But there is a great deal of education we need to do. Or all the doors will slam shut on us.

We got the experts and the CCC agreement. That is a very good start. It's "close enough to what we need". We could even lose that to CMS if we dont understand how to organize and fight. How to focus. How to agree to disagree and still move together. How to build the support and awareness, of both unknowkedgable patients, their families and friends, the general public (all of which know nothing about ME or ICC let alone the IoM or CCC) that is absolutely critical to get what we want from public officials.

 

[Andrew]

he trained us to "get what you can that's as close to what you need!" Get that and move the next and next.

That's true. The "all or nothing" approach often leads to nothing.

 

[Starfive]

Delia, what are your recommended actions at this point. Is there a script for sending to the subcommittee members? What do you mean by going public? I would think the democrats especially do not need any more press about HHS. Yet as you say hardly anyone knows the name game, CCC vs ICC vs CDC, FUDUKA vs yada yada so how do you educate while recruiting support?

 

[Ren]

HHS rejected CCC because it was too old and they want IOM to consider more recent evidence. But the irony of that position is that at the same time, HHS has questioned the importance of PEM/PENE and Snell's evidence around CPET. If that is not accepted, I struggle to see what other evidence will be accepted.

I. The Past Decade

I'm still wrapping my mind around the following - but perhaps it plays a part in what's to come. In regard to * more-recent evidence * mentioned above [Emphasis below added]:

" Neuroplasticity, Psychosocial Genomics, and the Biopsychosocial Paradigm in the 21st Century" (2009/10)http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2933650/

"The biopsychosocial perspective is a foundation of social work theory and practice. Recent research on neuroplasticity and psychosocial genomics lends compelling support to this perspective by elucidating mechanisms through which psychosocial forces shape neurobiology..."

"...These findings are complemented by the contributions of psychosocial genomics, a field of scientific inquiry that explores the modulating effects of experience on gene expression. Findings from these new sciences provide external validation for the biopsychosocial perspective..."

"At its inception, there was scant evidence to support Engel's biopsychosocial perspective; however, scientific discoveries of the past decade have provided important new findings validating and elaborating the biopsychosocial paradigm."

"Over the past decade, two fields of empirical investigation, neuroplasticity and psychosocial genomics, have offered important findings that may lead to a paradigm shift in our conceptions of psyche and soma and the modes of their interrelationships."

"The notion that social experience can lead to changes in gene expression was voiced most prominently by Nobel laureate, Eric Kandel*, who regarded this observation as the core component of a new paradigm for psychiatry (1998)... This powerful claim, while supported by over a decade of rigorous research, has rarely been directly tested. However, advances in psychoendoneuroimmunology, the study of how mental processes affect the immune system, have clearly shown the effects of psychological and social factors on human physiological functions..."

[*Kandel did post-doc work, at least, at NIH. He became a member of the National Academy of Sciences in 1974.]

"The social work profession's historical emphasis on the social environment as the context for individual well-being is supported by research over the past decade. Neuroplasticity and psychosocial genomic research indicate that socioenvironmental forces have the potency to alter human well-being through their effects on neurobiology."

"Over the past decade neuroplasticity research has enriched the biopsychosocial perspective..."

"While tentative at present, empirical investigations of the psychosocial genomic hypothesis will likely proliferate over the next decade..."

"ELG was supported by Grant Number T32AT003378 from the National Center for Complementary and Alternative Medicine."




II. Wayne Jonas - NIH Complementary and Alternative Medicine

And from earlier notes* from the most-recent Gulf War & Health report - Treatment for CMI (2013):

"Several of the above-mentioned interventions are in the area of complementary and alternative medicine and the VA should consider coordinating future research efforts with the National Institutes of Health’s National Center for Complementary and Alternative Medicine." (p.191)

As posted earlier elsewhere, the Gulf-War-and-Health Treatment for Chronic Multisymptom Illness (2013) committee included Wayne Jonas (http://www.samueliinstitute.org/about-us/wayne-b-jonas-md) who "served as the director of the Office of Alternative Medicine at the National Institutes of Health from 1995 to 1999; before that, he was the director of the Medical Research Fellowship of the Walter Reed Army Institute of Research. He served for 24 years as an Army medical officer..." (p.199).

*http://forums.phoenixrising.me/inde...g-the-first-gulf-war.26486/page-3#post-406434



III. "The Medicine we do: Real Reform of Healthcare"*

"In February 2009, The Institute of Medicine held a summit on Integrative Medicine and the Health of the Public at the National Academy of Sciences. Six hundred key leaders and stakeholders in healthcare, including educators, scientists, community leaders, practitioners, lawmakers, policy makers, and insurance leaders, attended it. It was a broad coalition that came together with a common purpose: to change not only the way we do medicine but also the medicine we do."

"Key models advanced included implementation of healthcare teams for chronic disease..."

"Dr Wayne Jonas of the Samueli Institute presented his model for a national wellness initiative
(WIN) that provides a framework for creating a culture of health and wellness through public and private efforts across diverse sectors and industries of our society."

"The same week, Senator Kennedy’s (D-Massachusetts) Senate working group on healthcare reform held hearings on integrative and functional medicine... A number of us met afterward with Senators Harkin (D-Iowa) and Mikulski (D-Maryland) and their key healthcare advisors, who are allies in moving this agenda forward. I also met with key policy makers in the White House."

"Government agencies and departments with domains that impact health, such as... Health and Human Services..., etc, must be coordinated to create a culture of health and wellness."

"...none of our efforts will matter unless we address the true drivers of cost and chronic disease. This is a national security issue that threatens our standing in the world. As President Obama stated, 'Fixing healthcare is no longer only a moral imperative but a fiscal imperative.'"

"Focus specifi cally on developing policies and programs for lifestyle-based chronic disease prevention and management, integrative healthcare practices, and health promotion. Real healthcare reform is now possible in a perfect storm where alignment of economic, scientific, and moral imperatives provides an opportunity for us as a nation to do well by doing good through fundamentally changing the medicine we do."

-----------

For those interested, there is also a small critique of EBM - "A recent JAMA review that examined the basis for clinical practice guidelines for evidence-based medicine (EBM) found that only 11% of guidelines are based on fi rm clinical evidence (level of evidence A); most are based on "expert" opinion (level of evidence C).6 Of guidelines with good evidence (level A), only 19% are Class I recommendations (general agreement among experts that treatment is useful or effective).

*http://drhyman.com/downloads/MedicineWeDo.pdf


------------

[Edit:]

IV. "Obama to Unveil Initiative to Map the Human Brain"*

"Three government agencies will be involved: the National Institues of Health, the Defense Advanced Research Projects Agency and the National Science Foundation."

"The initiative exists as part of a vast landscape of neuroscience research supported by billions of dollars in federal money... 'The goal here is a whole new playing field, whole new ways of thinking," he said. "We are really out to catalyze a paradigm shift.'"

"The project grew out of an interdisciplinary meeting of neuroscientists and nanoscientists in London in September 2011."

*http://www.nytimes.com/2013/04/02/s...l-initiative-to-map-the-human-brain.html?_r=0


Also, and I don't have a reference on hand, but I believe Obama - of all candidates - received by far the largest donations from the insurance industry.

 

[justinreilly]

Nothing in the expert's letter to Secretary Sebelius contradicts the position taken by the International Consensus Panel. Patients contradict the experts at their peril. A lack of consensus between patient groups and the scientific community opens the door to having a group such as the IOM committee make recommendations to resolve the controversy. Our strength lies in our willingness to support our experts.

I agree that the expert's letter doesn't contradict ME-ICC.

I also agree that we should support our experts as much as we can. That's a very good point. So it really pains me to say that I am against the experts' position on leaving CFS out there instead of throwing it totally away.

Do you mind answering and addressing my post 'on the merits'? (putting aside for a minute what the experts' position was in ME-ICC) I am open to learning any reasons (in addition to the valid one of supporting our experts when practicable) that we should not throw "CFS" in the trash.

 

[justinreilly]

Chronic Fatigue Syndrome became a name specifically to define the ME outbreak!...

99% of doctors and Americans have never heard of ME. We have to educate them over...

By giving [CFS] any legitimacy it ensures that hundreds and thousands of people will continue to suffer from this travesty!...

I know what I'm doing. I'm an experienced political strategist who has been very successful.

These are very good points, imo.

If we give "CFS" any legitimacy including saying that it is some syndrome different from ME, then we will be condemning ME patients and those "CFS" patients both to bad science and abuse from the usual suspects for a long time.

This is a less important point, because I am concerned primarily with helping us and making the science and people's understanding of ME accurate, but leaving "CFS" out there as ICF instead of throwing it away also lets the bad guys off the hook, because they can say later "oh, that was the problem, CFS does exist and it is a wastebasket of chronic fatigue, we just couldn't tell that there were some people in there with a real disease called ME, because the science hadn't gotten there (wasn't advanced enough to differentiate ME people from the other CFS people) at the time."

btw what I'm talking about here is say, 10 - 20 years or whatever in the future when they finally admit ME is a discrete physical disease. In the meantime they will say (as i posted before) that "now CFS is defined as any chronic fatigue of unknown origin (Idiopathic Chronic Fatigue), and another name for CFS (i.e. ICF) is ME/CFS; so you see ME/CFS is just any chronic fatigue of unknown origin as we have been saying all along."

We can say, "no ME was separated out of CFS" as much as we want then and we will still be treated like sh#t like now, because, like now, 'they' will be able to drown us out with constant repetition of their lies. This will create enough confusion, as now, to mire us in hell. So, we need absolute truth and clarity, thus "CFS" must be put to death.

 

[justinreilly]

On the other hand, lets say we try to convince the ME-ICC drafters that it is better to do what I suggest. Hopefully they will agree and we will all be on the same page.

If we are not able to convince them right away, that is not good, but all is not lost, because they are all behind CCC in the letter (and ME-ICC isn't mentioned in the expert or advocates' letters) and iirc, CCC says something not too far from what I am saying, that "'CFS' was a bad name and had a bad definition. What CDC meant was the physical disease ME, which we (CCC) define correctly. We are calling it ME/CFS for now so that people realize that the disease behind what was called 'CFS' was really ME."

And say also we keep insisting on ME being 'separated out' (as we all want) and recognized as a discrete physical disease defined by CCC (or another good definition), and the term "CFS" thrown away, then I see the following chain of events with ultimately a good result:

(1) first either one of three things happen
____(a) the contract is cancelled (Yay!!),
____(b) the contract goes forward and comes up with a pretty good definition (dream on!) or
____© the contract goes forward and produces a bad definition.

The first two possible outcomes are good. If the third © happens, then obviously we will need to fight that definition to the death.

In either of these three outcome scenarios, we keep insisting that ME be 'separated out' and 'CFS' thrown away. The changes we want to see will take longer under scenario © but they will eventually happen.

The changes will be that:
(2) the experts will start doing what we request, i.e. separating ME out and throwing "CFS" away. Just a few at first, say Leonard Jason, Enlander, and maybe a European or two;

(3) The patients and good ME patient groups have already done this, but now the slower to change orgs such as PANDORA eventually will change to do this;

(4) then the more mainstream ME researchers and IACFS/ME will change;

(5) then a government agency or two will change;

(6) then all the government agencies except CDC change;

(7) CAA changes;

(8) eventually under enormous pressure from all sides, CDC changes and says:
"There is medical consensus that the name of the disease previously known as 'CFS' be changed to 'ME', as this is a more specific name and there is now finally sufficient scientific evidence that this is a scientifically appropriate name. The term 'CFS' is being retired. We are also pleased to announce that the tireless work of CDC, NIH and the rest of HHS, along with IoM and ME researchers and clinicians we have now arrived at a new consensus definition with biomarkers showing this is a physical illness."

(9) all along, Wessely and company will be fighting this, but his position has been cast into serious doubt for a while according to most doctors, and now, consistent with the statements of CDC, he has been proven to be wrong according to most doctors; Wessely and company now try to move on to prey on people with Idiopathic Chronic Fatigue, calling them somaticizers who need mental health treatment; however they don't get any traction, since they have been discredited for being either wrong, incompetent or lying (depending on who you talk to) about "ME/CFS" for so long;

(10) ME patients are treated like human beings (who have a serious physical disease); good science is adequately funded and breakthroughs occur; treatments come to market;

(11) Like HIV patients now, we are healthy and supported enough to resume a somewhat normal life; having seen the dark side and not wanting it to happen to anyone else, some of us advocate in some of our work- or spare-time for Idiopathic Chronic Fatigue patients to be adequately studied and sub-grouped; eventually they are and effective treatments are found for some of the sub-groups;

(12) Wessely is de-knighted; he and his co-conspirators are punished at least to some extent (yay!); CDC and NIH probably get off scot-free (but who knows);

(13) A cure is found for ME (yay!);

(14) Most people with ICF are diagnosed and cured of the new ICF subgroup diseases (Yay!).


If we instead say that "CFS" should stick around and be redefined as Idiopathic CF, eventually all of this good stuff will happen. But before it can happen, there will be many more dark years of abuse of both ME and "CFS" (i.e. Idiopathic CF) patients caused by the usual suspects continuing to intentionally create confusion by conflating ME, "CFS" and ICF, just like they have done so far.

 

[justinreilly]

Regarding Justin's point about "CFS" being equal to "ME" plus "CF" - Using data mining techniques with immune markers and functional status, Maes showed that he could distinguish three groups - Fukuda with PEM, Fukuda without PEM and chronic fatigue. Put another way, Fukuda contains more than just patients that meet CCC/ME-ICC and those with chronic fatigue. Those who did not have PEM did have elevated levels of immune markers although not as high as those patients with PEM. The term "CFS" as a pathological entity may have swept up more than just the the symptom of chronic fatigue and the disease described by ME-ICC/CCC.

Maes, M., et al., Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Chronic Fatigue (CF) are distinguished accurately: Results of supervised.... Psychiatry Research (2012), http://dx.doi.org/10.1016/j.psychres.2012.03.031http://www.ncbi.nlm.nih.gov/pubmed/22521895​

But that only emphasizes the point. "CFS" is a man-made clinical entity of diverse conditions linked together by the symptom of chronic fatigue and whether that fatigue is medically unexplained or not. I don't know of any publication that provides the scientific basis or rationale for considering all of these diverse conditions to be part of a single clinical entity - for instance, there is no proof that they all share a biological pathology. As an entity, it doesn't advance the science and certainly has not advanced clinical care. In fact, I think its fair to say that lumping these diverse conditions together under the "CFS" umbrella ensures that they will remain medically unexplained.

I agree with Justin that as a clinical entity, "CFS" needs to go and if there are other diseases inside of "CFS", they need to be investigated separately for the disease they are.

Read the abstract; does anyone have access to the full article?

Interesting that Cort is listed as a co-author.

Very interesting that Fukuda CFS without PEM has different average values for three of the biomarkers they studied than ME (Fukuda with PEM) and ICF. Would need to see the whole paper to really comment more, except to say that I obviously didn't like that they suggested the separation of ME, 'CFS' and CF.

I think it would be much better to divide it as ME and ICF, with 2 subgroups to ICF (say 'tentative ICF-1' (Fukuda without PEM) and 'tentative ICF-2' (other ICF cases)).

 

[Ember]

I am concerned primarily with helping us and making the science and people's understanding of ME accurate....

(and ME-ICC isn't mentioned in the expert or advocates' letters) and iirc, CCC says something not too far from what I am saying, that "'CFS' was a bad name and had a bad definition. What CDC meant was the physical disease ME, which we (CCC) define correctly. We are calling it ME/CFS for now so that people realize that the disease behind what was called 'CFS' was really ME."

And say also we keep insisting on ME being 'separated out' (as we all want) and recognized as a discrete physical disease defined by CCC (or another good definition)....

Please check your facts, Justin. Read the experts' letter:

The expert biomedical community will continue to refine and update the case definition as scientific knowledge advances; for example, this may include consideration of the 2011 ME International Consensus Criteria (Carruthers et al, Journal of Internal Medicine, 2011). As leading researchers and clinicians in the field, however, we are in agreement that there is sufficient evidence and experience to adopt the CCC now for research and clinical purposes, and that failure to do so will significantly impede research and harm patient care. This step will facilitate our efforts to define the biomarkers, which will be used to further refine the case definition in the future.

Read too the CCC Abstract:

Recent years have brought growing recognition of the need for clinical criteria for myalgic encephalomyelitis (ME), which is also called chronic fatigue syndrome (CFS).... Throughout this paper, "myalgic encephalomyelitis" and "chronic fatigue syndrome" are used interchangeably and this illness is referred to as "ME/CFS."

And the Introduction:

As the CDC definition was primarily created to standardize research, it may not be appropriate to use for clinical diagnoses, a purpose for which it was never intended. There has been a growing demand within the medical community for a clinical case definition for ME/CFS for the benefit of the family physician and other treating clinicians. The CDC definition, by singling out severe, prolonged fatigue as the sole major (compulsory) criterion, de-emphasized the importance of other cardinal symptoms, including post-exertional malaise, pain, sleep disturbances, and cognitive dysfunction. This makes it more difficult for the clinician to distinguish the pathological fatigue of ME/CFS from ordinary fatigue or other fatiguing illnesses....

The panel felt there was a need for the criteria to encompass more symptoms in order to reflect ME/CFS as a distinct entity and distinguish it from other clinical entities that have overlapping symptoms. As fatigue is an integral part of many illnesses, the panel concurred that more of the prominent symptoms should be compulsory.

 

[Ember]

Do you mind answering and addressing my post 'on the merits'? (putting aside for a minute what the experts' position was in ME-ICC) I am open to learning any reasons (in addition to the valid one of supporting our experts when practicable) that we should not throw "CFS" in the trash.

When you ask rhetorically, “why should "CFS" be left to stand since it would be just Idiopathic CF at that point,” Justin, you're presenting your lay opinion as if it were fact. The International Consensus Panel writes, “Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies:”

As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category....

The logical way to advance science is to select a relatively homogeneous patient set that can be studied to identify biopathological mechanisms, biomarkers and disease process specific to that patient set, as well as comparing it to other patient sets.

In choosing to battle over names, you seem to ignore the benefit that a CFS diagnosis (versus a CF diagnosis) may confer, as well as the fact that the IOM committee has already been charged with considering just such a change.

 

[Delia]

Delia, what are your recommended actions at this point. Is there a script for sending to the subcommittee members? What do you mean by going public? I would think the democrats especially do not need any more press about HHS. Yet as you say hardly anyone knows the name game, CCC vs ICC vs CDC, FUDUKA vs yada yada so how do you educate while recruiting support?

My best strategy got lost in this whole ME as a subset of CFS argument. Refusal to use ME/CFS for now and critical work and momentum and opportunity was thrown away.

I have been trying to defer to ME advocates, but as you can see, I am quite bitter and hurt this weekend, as the whole thing has come home to seriously harm me, after the first few months of making progress with my doctor, my family, and in garnering some home help and support. And just compassion and being believed. All due to Jen Brea and Ryan Prior. Had they not seen Ryan's video, using ME/CFS they would not have made the jump to pure ME of Jen's video, but she explained it well (before the change) and now I feel we've completely damaged ourselves by stubbornness.

I have not met any person who has not been harmed by family and friends disbelief and unwillingness to really learn about our condition. We have now, the opportunity to reach them. It is them we need. If legislators don't see we have a powerful message that will be supported by anyone, they can shove us to the side as usual.

I felt seriously, the only group I can join at this point is the memorial group and statistics and I came very close to that on Thursday.

What longtime ME advocates don't understand is we have finally landed in a position to reach all these people. We are in a "lay" arena now, and it's not that people should stop research, but they need to learn how to speak to connect with the general public and legislators and officials.

The legislators and officials HAVE to know the public is behind us, or that if the public hears our message they will get behind us.

I now have someone new who knows the facts better than me, helping to create the position paper we need. After mistakingly wasting all my time.

we start with that.

Position papers are used as a foundation for everything.

From meeting with legislators; to soliciting fundraising; to letters to the editor; to giving to the press along with press releases for each and every time we should be contacting the press. Which we've missed about 100 opportunities thus far.

They are used to cull down to a talking points paper. It takes the expert language and makes it so we can speak in a way the unknowledgable can take in and RELATE to us.

We simply can't expect them to jump in, where longtime advocates are. We have to meet them where they are knowledge wise. And in their hearts.

We are in a "lay" argument now. Not scientific. If we want to get the science we want. Because all this IoM, and even the creation of CFS was politically based. And science funding follows political influence.

We are in a political fight.

The other thing we need is an organizational structure with leaders and advisors and foot soldiers.