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CDC scheduling conference to discuss changing case definition (said at CFSAC)

Dolphin

Senior Member
Messages
17,567
It would be interesting to find out which clinics they will use.
In the past, they have used "chronic fatigue" collaborators
e.g.
Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health-care settings?
Aust N Z J Psychiatry. 2009 Jan;43(1):25-35.
Hickie I, Davenport T, Vernon SD, Nisenbaum R, Reeves WC, Hadzi-Pavlovic D, Lloyd A; International Chronic Fatigue Syndrome Study Group.
Collaborators (28)

Bleijenberg G, van der Werf SP, Prins JB, Blenkiron PM, Buchwald D, Smith WR, Edwards R, Lynch S, Kirmayer LJ, Taillefer SS, Lee S, Martin NG, Gillespie NA, McIlvenny S, Sartorius N, Ustun TB, Skapinakis P, Wessely S, Chalder T, Hotopf M, Nimnuan C, Candy B, Darbishire L, Ridsdale L, White PD, Thomas JM, Wilhelm K, Wilson A.
I think all, are virtually of these, see CBT/GET as the main approaches required.
A lot/most/all (?) like to have "chronic fatigue" as the main symptom.
Peter White is a psychiatrist who uses data in a weird way and likes to bash Canadian criteria - I imagine he would come up with similar criticisms for the ICC ME/reasons why it shouldn't be adopted.
 

Dolphin

Senior Member
Messages
17,567
CDC announced it would be developing yet another case definition last October. :rolleyes: I kept hoping they simply decided not to proceed with this project. :headache:
Was it last October or the October before? I knew there was a lot of talk about meetings in the Reeves period but everything stalled for a while after he left from the program end of 2009/early 2010.
 

Hope123

Senior Member
Messages
1,266
If I heard correctly, they will be recruiting patients from 7 clinics. Two of the outside people involved have experience treating very ill folks with ME/CFS -- Ben Natelson (whose been in this for 20 years) and Andy Kogelnik. I couldn't get the name of the third person.
 

Dolphin

Senior Member
Messages
17,567
If I heard correctly, they will be recruiting patients from 7 clinics. Two of the outside people involved have experience treating very ill folks with ME/CFS -- Ben Natelson (whose been in this for 20 years) and Andy Kogelnik. I couldn't get the name of the third person.
Great. I'm pretty sure that the CDC CFS team have never published with Natelson or Kogelnik. So this looks like a new group rather than "the usual suspects" (e.g. people like Lloyd, White, Bleijenberg, etc who were Reeves' favourites) which is what I was scared of.

If it's a blank slate, I'm willing to give them leeway and hope for the best.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Great. I'm pretty sure that the CDC CFS team have never published with Natelson or Kogelnik. So this looks like a new group rather than "the usual suspects" (e.g. people like Lloyd, White, Bleijenberg, etc who were Reeves' favourites) which is what I was scared of.

If it's a blank slate, I'm willing to give them leeway and hope for the best.

I dont think its great at all.. if they are looking at sicker patients.. and want to change the definition and not name.. that means they will keep the same name but may make sure the sicker ME patients fit great into the CFS name.

They could make it so that no one can complain that the CDC CFS definition only mostly fits the less serious ones, the mostly psych. group or other missed diagnoses. (they could make this defintion change to do away with those saying we need ME defined differently to CFS by bringing CFS closer to what is ME).

I see that the waters may become far more muddled then they are now... (which I would not even have considered possible before hearing this news).
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,076
Location
australia (brisbane)
I dont think its great at all.. if they are looking at sicker patients.. and want to change the definition and not name.. that means they will keep the same name but may make sure the sicker ME patients fit great into the CFS name.

They could make it so that no one can complain that the CDC CFS definition only mostly fits the less serious ones, the mostly psych. group or other missed diagnoses. (they could make this defintion change to do away with those saying we need ME defined differently to CFS by bringing CFS closer to what is ME).

I see that the waters may become far more muddled then they are now... (which I would not even have considered possible before hearing this news).

Agree, only bed ridden patients will be diagnosed with ME and also this illness is relapsing and remitting, so one month you could have ME and the next you dont. They need to have a slidding scale of severity, better yet one day they might have a blood test or maybe use some of the latest more specific NK function testing that is being trialled in australia and dr peterson is said to be going to use as a biomarker.

cheers!!!
 

Dolphin

Senior Member
Messages
17,567
Agree, only bed ridden patients will be diagnosed with ME and also this illness is relapsing and remitting, so one month you could have ME and the next you dont. They need to have a slidding scale of severity, better yet one day they might have a blood test or maybe use some of the latest more specific NK function testing that is being trialled in australia and dr peterson is said to be going to use as a biomarker.

cheers!!!
In terms of numbers of symptoms, the revised Canadian criteria (Jason et al, 2010) have a sliding scale:

Meeting research versus clinical criteria:

Table 1 provides all the symptoms as specified in the Revised
Canadian ME/CFS case definition. Some meet full
criteria whereas others who are very symptomatic do
not meet full criteria. We argue as we did with the
Pediatric case definition (Jason et al., 2006) that those
that meet full criteria are more homogenous and might
be best used for research purposes and we now classify
these individuals as meeting the Research ME/CFS
criteria
. Still, others might have the illness but not meet
one of the required criteria. We classified such
individual as meeting Clinical ME/CFS criteria. These
individuals needed to have six or more months of
fatigue and needed to report symptoms in five out of the
six ME/CFS symptom categories (one of which has to
be post exertional malaise, as it is critical to this case
definition). In addition, for autonomic, neuroendocrine
and immune manifestations, adults must have at least
one symptom in any of these three categories, as
opposed to one symptom from two of the three
categories. We also have a category called Atypical
ME/CFS
, which is defined as six or more months of
fatigue, but having two to four ME/CFS symptoms.
There is also a category called ME/CFS-Like, which
involves exhibiting all criteria categories but for a
duration of fewer than 6 months. Further, a person
could be classified as having ME/CFS in remission if
the person had previously been diagnosed with CFS by
a physician but was not currently meeting the Research
ME/CFS Criteria, Clinical ME/CFS criteria, or Atypical
ME/CFS criteria and must have 0 or 1 classic ME/CFS
symptoms.
 

Desdinova

Senior Member
Messages
276
Location
USA
It must be data driven.
And that brings us to the big question what data will be driving it? I can't help but wonder a little bit if that statement is somehow a dig at the Canadian criteria definition and other similar criteria definitions that more accurately portray ME for what it is.

It just seems silly to me to reinvent the wheel all over when it's all ready been made. I have no problem with improving things. But it seems to me that their is already one or two criteria definitions that are data driven from which they could build upon. Is this going to be overseen by Elisabeth Unger?
 

Sing

Senior Member
Messages
1,782
Location
New England
What is THEIR problem? We already have a great case definition to go forward with, which is data driven, based on research and clinical facts. This was presented in Ottawa in September. Reinventing the wheel was exactly the phrase which came to my mind.

The problem is that they can't accept information unless it comes from their friends, their people, who have the same thinking they have, and so around and around this goes, stuck on repeat.

As poor as my brain functions, it functions a heck of a lot better than people whose approach is essentially political and dishonest.

These people have been handed their answer on a golden platter already. Why can't they just take it and go ahead?
 

Jill McLaughlin

Senior Member
Messages
196
ME is not CFS.

They redefine CFS constantly or talk about it. So they are trying to somewhat rename ME as CFS which seems to be what the Coalition/CFSAC is trying to do? This is just another false front and time waster. And CFS is already too entrenched in the med prof and even the general public as a fatigue syndrome, which is what it is. They are just trying to "use" ME to sell CFS.

We have an international consensus criteria - for ME. This is NOT for CFS and states as such. Why do we need 2 names, when most have worked for years to get rid of CFS? CFS is way too firmly entrenched and keeping it will continue to undermine us and bring in the fatigue mess.

ME patients need to first and foremost stop the Coalitions code change request which will make ME and CFS synonymous terms. The CFSAC
makes a recommendation to HHS to change the codes and the name, THEN has NCHS in to discuss it.

This is a CFS committee. Why are they allowed to hijack another illness? How do they get away with just creating this as an ME/CFS committee?
There is no such thing as ME/CFS, just another made up term with different meanings. This is the epitome of incompetence. NCHS
should have thrown out the Coalition's fictional code story. And this committee has fallen to such new lows they are really an impediment.



And that brings us to the big question what data will be driving it? I can't help but wonder a little bit if that statement is somehow a dig at the Canadian criteria definition and other similar criteria definitions that more accurately portray ME for what it is.

It just seems silly to me to reinvent the wheel all over when it's all ready been made. I have no problem with improving things. But it seems to me that their is already one or two criteria definitions that are data driven from which they could build upon. Is this going to be overseen by Elisabeth Unger?
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
Involving Natelson won't make a difference if he gets railroaded. Read the thing Byron Hyde wrote about the history of CFS. The real experts who showed up during th initial studies were ignored and pushed to the fringe.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
ME is not CFS.

They redefine CFS constantly or talk about it. So they are trying to somewhat rename ME as CFS which seems to be what the Coalition/CFSAC is trying to do? This is just another false front and time waster. And CFS is already too entrenched in the med prof and even the general public as a fatigue syndrome, which is what it is. They are just trying to "use" ME to sell CFS.

If this is to be our goal, we need to identify an ME patient group in the U.S., and through them insist that 1) the NIH start funding research, 2) the insurance diagnostic code be put back, 3) all branches of the DHHS recognize it as an illness, and that 4) the medical community stop diagnosing ME patients as CFS.

Do you know of such a group? Do they have a forum? Do you think we should take this approach?
 

Ember

Senior Member
Messages
2,115
If this is to be our goal, we need to identify an ME patient group in the U.S., and through them insist that 1) the NIH start funding research, 2) the insurance diagnostic code be put back, 3) all branches of the DHHS recognize it as an illness, and that 4) the medical community stop diagnosing ME patients as CFS.

Do you know of such a group? Do they have a forum? Do you think we should take this approach?

A new group may be needed, more in line with ESME (http://esme-eu.com). I notice that Dr. Enlander is on ESME's Scientific Panel. Unfortunately their forum is currently under construction.

Our mission is to create a Think Tank where top scientists from relevant fields can discuss current ME knowledge in order to determine the most crucial direction of future research, and to provide a reliable source of cutting-edge ME information that ESME will incorporate in the education of medical professionals.

ESME recommend that: Researchers use the ICC exclusively and call the disease ME in all written documents about their research. Government agencies/foundations give research grants to scientists using the ICC. Government agencies/institutions officially adopt the ICC and post them on official websites. Doctors use the ICC to diagnose patients and write only ME G93.3 in patient journals or in all written documents about these patients. Advocates/patient associations speak with one voice by agreeing to call the disease ME.

http://esme-eu.com/home/new-criteri...-for-researchers-clinicians-article514-6.html
 

Dolphin

Senior Member
Messages
17,567
A new group may be needed, more in line with ESME (http://esme-eu.com). I notice that Dr. Enlander is on ESME's Scientific Panel. Unfortunately their forum is currently under construction.

Our mission is to create a Think Tank where top scientists from relevant fields can discuss current ME knowledge in order to determine the most crucial direction of future research, and to provide a reliable source of cutting-edge ME information that ESME will incorporate in the education of medical professionals.

ESME recommend that: Researchers use the ICC exclusively and call the disease ME in all written documents about their research. Government agencies/foundations give research grants to scientists using the ICC. Government agencies/institutions officially adopt the ICC and post them on official websites. Doctors use the ICC to diagnose patients and write only ME G93.3 in patient journals or in all written documents about these patients. Advocates/patient associations speak with one voice by agreeing to call the disease ME.

http://esme-eu.com/home/new-criteri...-for-researchers-clinicians-article514-6.html
I'm not sure if this is anything more than a statement at this stage. The ICC only came out fairly recently. There are few researchers these days who use ME only - I would need to see some of them doing this. Guessing, I think it may have been the patients involved who wrote this? Anyway, time will tell I suppose - my point is I'm not sure yet if ESME would fit the criteria.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
A new group may be needed, more in line with ESME (http://esme-eu.com).

Thanks for the link. If there were to be a patient group for ME, they would need to forge alliances with the CFS community. Which is sort of an odd concept, considering that we have ME too. And considering that we hate the CFS name too. And considering that a lot of us like the ME name. And considering that the Tahoe outbreak was ME.

Anyway, it looks like the ESME is trying to do something like that. They are embracing the Norway study, etc. and simply calling it ME. What I don't know is whether this angers existing ME groups.
 

Nielk

Senior Member
Messages
6,970
Involving Natelson won't make a difference if he gets railroaded. Read the thing Byron Hyde wrote about the history of CFS. The real experts who showed up during th initial studies were ignored and pushed to the fringe.

Natelson is a Neurologist and very aware of the history of the disease and what it entails. It makes sense that if it's going to be coded as a "neurological disease", that they would consult a Neurologist. He will not get railroaded.

He is the one who did the study with the proteins in the spinal fluid of ----- patients. I can't use a name because Jill will bite me!
 

Ember

Senior Member
Messages
2,115
If there were to be a patient group for ME, they would need to forge alliances with the CFS community.

If ME patients are (as I believe us to be) a sub-group within the CFS community, then CFS organizations will be hard-pressed to speak for ME patients. They need to represent the whole community and not just a sub-group.

A patient group for ME would want to forge alliances with the CFS community (especially if, in fact, we are part of that community).