What Should Phoenix Rising Tell the IOM Committee?

[Ember]

Also, a big issue for us to grapple with is illustrated by Dr Snell's latest CPET study. The study recruited Fukuda CFS patients who also had PEM. So how do we tell the committee to consider this to be ME research when, technically, it CFS research?

Is research using a cohort of "Fukuda CFS patients who also had PEM" technically CFS research?

 

[Bob]

Is research using a cohort of "Fukuda CFS patients who also had PEM" technically CFS research?

I think it is.

Technically, it is a subset of Fukuda CFS. (PEM is a valid symptom for Fukuda CFS.)

What do you think?

 

[Ember]

What do you think?

Technically, ME is a subset of Fukuda CFS. PENE is its cardinal feature.

 

[Bob]

Technically, ME is a subset of Fukuda CFS. PENE is its cardinal feature.

But, Ember, if I were to assert that ME is defined by Fukuda+PEM, I don't think you'd accept that. Would you?
My question is, how do we make the distinction, for the IOM committee, between 'CFS' research that is ME-related, and 'CFS' research that is not ME-related?
Should we attempt to make that distinction?
If so, how would you make the distinction?

 

[Ember]

But, Ember, if I were to assert that ME is defined by Fukuda+PEM, I don't think you'd accept that.

Doesn't Fukuda+PEM seem closer to a description of ME than to CFS?

 

[Bob]

Doesn't Fukuda+PEM seem closer to a description of ME than to CFS?

Perhaps.

If we want the IOM to interpret Fukuda+PEM as equating to 'ME', then perhaps we need to explain this clearly to them in our submissions? But then (if Fukuda+PEM defines 'ME') they might question the need for CCC/ICC?

I haven't got any answers at this stage, which is why i'm asking questions.

 

[WillowJ]

it depends who is clarifying what PEM/PENE means.

If they say "exercise causes (excessive) fatigue" something like how NICE tried to explain it, then it is not sufficient, and Fukuda+"PEM" (or Oxford+"PEM", à la NICE) does not necessarily equal ME.

 

[adin]

Since there's been some good feedback here, is there anyone who's up to working on putting this presentation together with me?

And I hear most would like a more technical presentation along with stating our objection to the contracting methodology and the composition of the panel. (Please don't get too hung up on my wording yet as long as the concept is correct).

Btw, one thing that Klimas has been working on was immunological biomarkers for ME, so she may have some diagnostic criterion that have not been published/peer-reviewed yet and that may be released before the conclusion of this panel. Also note that Dr. Klimas testified to congress this week about the US VA's inability/refusal to implement her GWI diagnostics & treatments outside her VA specialty clinic.

This definitely is the big leagues and we have to be a little careful about how we present our information to this panel. While we don't recognize the validity of this panel to define our illness, every single member of this panel is highly esteemed in *some* field. In my humble experience, in the medical research field, the larger the esteem, the larger the 'self-esteem'.

 

[Firestormm]

CAA posted their own survey here. I thought it might be worth at least a look to see if we would like to raise similar things in our own presentation e.g. problems encountered in obtaining a diagnosis. It is a very very short survey, not as good as the PANDORA survey in my view (that has now closed though you can still read the questions) - which might be another source to be used to focus our own thoughts.

 

[Firestormm]

I came across this from the ME Association which describes in a paragraph what is felt to be the main reason for supporting the CCC over other (previous) definitions. You can probably come up with better, but I think it succinct, and came across it while working on something else, so figured I would add it here:

The Canadian guidelines

In contrast to the 1994 CDC criteria, which make “fatigue” a compulsory symptom but downplay and make optional post-exertional sickness and other cardinal symptoms, the Canadian clinical case definition specifically selects patients whose condition gets worse with exercise. The clinical definition makes it clear that in order to meet the diagnostic criteria, the patient must become symptomatically ill after exercise, and must also have neurological, neurocognitive, neuroendocrine, dysautonomic (for example, orthostatic intolerance), and immune manifestations. So symptoms other than fatigue, must be present for a patient to meet the diagnostic criteria.

This case definition helps to distinguish ME/CFS patients from chronic fatigue patients, depressed patients, somatization, fibromyalgia, and other diseases with which ME/CFS has been confused, including those that improve with exercise. The Canadian definition specifically states that patients “become worse after exercise rather than better.” The new case definition, much of which is backed by research and hard science, is a strong counterstatement to the view held by many psychologists and psychiatrists.

http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/

I took it off their website. There are better narrative comparisons I am sure. Including perhaps something about the inclusion of muscular symptoms which incidentally the MEA draw attention to in their earlier narrative and in the comments from Melvin Ramsay.

Again, I think it would help us to look at the CCC and draw from it those specific elements that we feel would make a difference over Fukuda.

 

[beaker]

Listen to our experts and adopt, for now, the CCC.
f

International experts recommend removing from the broader CFS category those patients diagnosed with the complex multi-system disease, ME, whose cardinal feature, PENE, is operationalized using a 2-day CPET.

bold is mine

Important to note somehow w/ that kind of rec, that some too sick for that testing.

 

[beaker]

Regarding the two-day CPET test, it probably hasn't got a robust enough research basis for them to consider it as part of a national diagnostic criteria. (I'm just pointing this out so that people are aware of it.)

However the CPET test is an excellent demonstration of the difference between fatigue and ME, so it could perhaps be very helpful to highlight the results of two day CPET testing for illustrative purposes.

Also, a big issue for us to grapple with is illustrated by Dr Snell's latest CPET study. The study recruited Fukuda CFS patients who also had PEM. So how do we tell the committee to consider this to be ME research when, technically, it CFS research?

How do we clarify the difference between shoddy 'functional' CFS research and good quality biomedical (ME-related) CFS research. Our should we even attempt to? Can we come up with a formula that could help the committee distinguish 'functional' chronic fatigue (CFS) research (that is not related to ME) from ME-related CFS research? Or would we be shooting ourselves in the foot by attempting to distinguish 'good' CFS research from 'bad' CFS research, in relation to 'ME'? If they don't consider good biomedical (ME-related) CFS research then it will leave them very little pure ME research to consider.

(These are all questions - I have no answers at this stage.)

Also, along these lines, is that still many of the experts in the US who signed the letter to HHS still use CFS term . At least in the states. It has long been difficult here, because that's the name ME was given back in the 80s here.
The experts --such as Peterson, Bell, Cheney, Klimas ,etc... all know each other and each other's work and know what patients or type of patients the other is using/describing in studies , even though it is more often than not , over the years CFS. And they have published research under CFS, even though there patient groups were ME.
It gets very confusing for other doctors outside the loop. I try to explain to my own dr.
He reads the stuff. But still my official dx is CFS. I don't even know if there is a ICD-9 code for ME ?
And my disability is under CFS. But I have ME. or ME/CFS.
It is frustrating, as I think there are many many many patients out there who are ME in the US w/ CFS labels. But aren't involved or informed enough to know that there is a discrepancy or why. ( I know because I spoke w/ one and she wasn't concerned or seem to be interested. There is a severe lack of knowledge w/i our own illness cohort. )
I guess b/c of all this Name switching around and such, I prefer the ME/CFS term for now in the US

TL/DR This whole confusion of what it has been called over the years in the US at least, complicates the research available. Somehow that needs to be addressed or explained. But then. w/ Nancy on board, I would think/ hope that she could get the point across.

 

[Ren]

At this point, and if I myself were making this pitch, I would consider stating:

(1) This secret contract is not wanted.

(2) The patient community has lost faith in the US government to stop its campaign of abuse.

(3) I would then state that my remaining six minutess will be used as a "moment of silence" to honor all those - civilians and veterans - who have died "naturally" or by their own hand, due to past and present state-and-corporate coerced medical negligence.

 

[Roseblossom]

Also, along these lines, is that still many of the experts in the US who signed the letter to HHS still use CFS term . At least in the states. It has long been difficult here, because that's the name ME was given back in the 80s here.
The experts --such as Peterson, Bell, Cheney, Klimas ,etc... all know each other and each other's work and know what patients or type of patients the other is using/describing in studies , even though it is more often than not , over the years CFS. And they have published research under CFS, even though there patient groups were ME.
It gets very confusing for other doctors outside the loop. I try to explain to my own dr.
He reads the stuff. But still my official dx is CFS. I don't even know if there is a ICD-9 code for ME ?
And my disability is under CFS. But I have ME. or ME/CFS.
It is frustrating, as I think there are many many many patients out there who are ME in the US w/ CFS labels. But aren't involved or informed enough to know that there is a discrepancy or why. ( I know because I spoke w/ one and she wasn't concerned or seem to be interested. There is a severe lack of knowledge w/i our own illness cohort. )
I guess b/c of all this Name switching around and such, I prefer the ME/CFS term for now in the US

TL/DR This whole confusion of what it has been called over the years in the US at least, complicates the research available. Somehow that needs to be addressed or explained. But then. w/ Nancy on board, I would think/ hope that she could get the point across.

~~~

Yes, that confusing name thing has to be fixed, especially so that the research can be clear. Even the thumbnail biographies of the IOM Committee members use the terms interchangeably: http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49592

Even Dr. Nancy Klimas' bio: "...She is one of the world's leading researchers and clinicians in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) ...She continues to work nationally and internationally to bring a better understanding of ME/CFS to clinicians and policymakers."

My doctors call it CFS; I think of my illness as ME; when I write about it I use ME/CFS just so that people who call it CFS know what I'm talking about (though I hate that CFS name); but when I say it out loud I just say "M.E." partly so I don't have to say "em ee slash cee eff ess".

sheesh.

~~~

 

[Chris]

I think Alex's focus on the 2 day test is spot on, but remember that this is aimed at a committee that includes Klimas, Bateman, Rowe and others, and I think we can safely assume that they know this stuff too. The P2P committee is another, and still unkown, affair.
Chris

 

[Nielk]

I went to a new Endocrinologist this past week because some new symptoms have cropped up for me and as part of the work up,I mentioned that I have been suffering from Chronic Fatigue Syndrome for the past 11 years. He was quiet for a few moments and then said: "You know what that diagnosis means, right? It is when you have several symptoms and they can't find what it is, that's what Chronic Fatigue Syndrome is".

I can't say that I was shocked because to be honest I have had that reaction from several previous doctors that I have seen and it is actually preferable to the reaction of saying that it is just depression and somatic.

I was going to react and try to explain to him what I thought what this diagnosis was but, stopped myself because if I really think about it, this is probably a good description of what HHS thinks that this disease is. It is more or less the description of Fukuda which is still used to day by NIH and CDC.

I feel that in order to adequately explain the damage that HHS has done to 'this disease', one needs to go to the beginning and follow it's history of how NIH and CDC has with a concerted effort watered down, minimized, marginalized this disease to a point where it is not recognizable from the core disease that CDC sent out two lightweights to investigate in the 80's in Lake Tahoe.

I have thought hard about what my vote would be for PR to present to the IOM and it looks a lot like what Ren posted above.

(1) This secret contract is not wanted.

(2) The patient community has lost faith in the US government to stop its campaign of abuse.

(3) I would then state that my remaining six minutess will be used as a "moment of silence" to honor all those - civilians and veterans - who have died "naturally" or by their own hand, due to past and present state-and-corporate coerced medical negligence.

My vote is to definitely state, for the record, that most of the community is against the IOM contract and are in support of our experts' open letter urging HHS to adopt the CCC now. Any criteria that they produce which is 'broader' than CCC will not be accepted by patients, advocates and the experts in the field.

Then, I would want to explain why. I would briefly go through the history of how the CDC came to look at an outbreak of a serious, debilitating, seemingly infectious disease at Lake Tahoe and decided to downplay it and even though it looked like the disease called Myalgic Encephalomyelitis in the U.K., to call it 'Chronic Fatigue Syndrome". This was one of the many major 'mistakes' that the CDC took in it's path of destruction of this disease. They gave it the Oxford definition that hardly described the 'Lake Tahoe disease'. As a matter of fact, anyone who had felt tired for 6 months and suffered from a few other symptoms could be included in this umbrella diagnosis.

With all the great outcry from patient groups, advocates, patients, clinicians, scientists and researchers, HHS still holds on to this notion today, more than 25 years later! Not only have the patients who have and are suffering from the 'core' disease of ME been shortchanged in the denial of serious funding for the disease and therefore resulted in the availability of no treatments, thousands and maybe hundred of thousands have been 'damaged' by the insistence of the crazy notion that one can exercise themselves out of this! I know that I have been rendered disabled for the past eleven years because I was told to 'push through' my fatigue (which was really bone crushing, lead feeling exhaustion). Unfortunately, I know of countless cases, especially in the U.K. where graded exercise therapy is aggressively pushed, where patients have been rendered permanently bed bound by this exulted "treatment therapy'.

Therefore, I would seek the following from this panel:

1- Go back to the core of this disease. This is a complex, serious, debilitating, multi system disease which leaves it's patients disabled. All can't continue to function in their life as before. About half can't work at all and a quarter are left bed bound for the rest of their lives.

2- Give this core disease it's due name of 'Myalgic Encephalomyelitis'.

3-PEM/PENE has to be a hallmark of this core disease.

4-Neurological and immune dysfunction need to be present.

 

[Bob]

I'm not yet sure if the public (if not making an oral submission) can make written submissions. If we can make written submissions then I urge anyone who's posted in this thread to submit individually. There've been excellent comments in this thread.

 

[Nielk]

I'm not yet sure if the public (if not making an oral submission) can make written submissions. If we can make written submissions then I urge anyone who's posted in this thread to submit individually. There've been excellent comments in this thread.

Yes, we could make written submissions.

Can the public submit comments during the open meeting?

Webcast attendees may also submit comments via the email (mecfsopensession@nas.edu). All written comments will be included in the Public Access File created for the study, and should not include any personal medical information.

 

[Seven7]

@Nielk Can the email be sent before hand or has to be during the webcast???

 

[Nielk]

@Nielk Can the email be sent before hand or has to be during the webcast???

They don't state but, I would assume it can be sent in anytime before or during. It is really for their record.