Discussion in 'General ME/CFS News' started by Nielk, Jul 21, 2011.
PEM is now PENE (post exertional neuroimmune exhaustion). Pronounced pen'-e. Rhymes with "henna"?
Ember do you know if Dr.Bested from Toronto is on this as well?
The International Consensus Panel is described at the beginning of Nielk's first post on this thread. I don't see Dr. Bested's name on the list.
thanks Much Ember...sad to see that Dr.Bested is not on this new Consensus. She was on the CCC I believe.
Thank you Kaffiend.
Gordon Broderick, a Canadian researcher from Albertra has been instrumental in this. He is also working with other researchers in Canada. ME/FM National has been helpful in putting much together.
It will require work to make it happen, but the fact that it's an international document to start with should help. But we also need to get behind it and put pressure on our respective governments to adopt it. In the US, I think we should get it on the agenda for the next CFSAC meeting. We also need to get the patient organizations and the IACFS/ME behind it.
yes the CDC have aknowledged them as being different things at times. In that respect it is possible this name change may make things worst as they wont have to say they are different anymore. If this change happens but the defination which ends up being taken on board with it or kept is a bad one eg like the CDC CFS ones. This whole thing could turn out to be real bad as suddenly we've lost a very serious disease by putting an offical crappy definition to it.
This is what I fear the CDC now may do.. take on the name ME but at the same time stick to crappy definitions... so further water down real ME.
I so hope Im wrong but this is what I predict may happen. It could align world thought on ME to what has happened in england. So Im personally a bit worried.
We NEED to make sure that ones like the CDC not only take on the name..but also recognise decent ME criteria
Post removed by Suzy Chapman
The criteria I guess may be much like the canadian consensus one. There is many patients who have CFS who dont fit that criteria hence there will still be division. What happens to those patients?
There needs to be division as not everyone has got the same or even similar things going on.
It feels like a repeat of when the canadian consensus doc and defination came out. Places like the CDC ignored and and other places such as Australia were divided with it.. with our aussie associations supporting it but the medical practioners being given out also other criteria and advice conflicting some with it. So in the end they were just left to follow whatever thoughts they wanted as there wasnt a complete consensus in the country.
Look what happened with the canadian consensus doc.. even with so many trying to push that around that world it never got made international. The ones who formed the canadian doc I thought were experts from all about the world too. that was formed by a consensus panel to. How is this new thing going to be different?
The longer one has the disease.. the more we see of repeats of all kinds in the ME/CFS field and often things dont change, we can only keep hoping that this time they will.
Lack of clear definition was holding everyone back, not just me or me/cfs or cfs patients. If the science can progress, benefits should flow through to everyone. This is not just about XMRV. In fact if you look at the panel membership there was a strong representation from those I would regard as pretty anti XMRV, but pushing there own theories.
Main thing on a patient level is that we treat each other with respect.
Edit: You do make a good point. I will continue to use me/cfs label in documentation, contrary to my earlier comments.
Table is simpler to follow. If you are doctor, just give patient the pages and ask them to circle the things they have. Then all doctor has to do is count them within each category.
Sadly, at this time, I am missing one. Under the flu-like symptoms, I have only one. Now, I fit all the other criteria. So I guess I am atypical. I used to have sore throats, but not any more.
Don't like PENE. I prefer to post exertional exacerbation of symptoms. That would be PEES. LOL
Wish there was an objective biological test in there.
All that said, I do plan to take to my doc next visit. In fact, might just mail it to her. Now, this is for internist, but ME is classified for neurological. So, who is going to treat this new ME?
I am also surprised they used "encephalomyelitis" as I was hearing from many researchers that they preferred "encephalopathy." I have a feeling there was some compromise to add more names, setting aside details to make the message stronger.
May you live in interesting times. Boy, these last three years have certainly been interesting. And I bet more is to come.
To PENE or not to PENE
Good question. The full criteria in this new international ME definition seems stricter than the older Canadian criteria, both the original and revised versions:
"A patient will meet the criteria for post-exertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D)."
However, there is still looser criteria for Atypical ME:
"meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases."
ME focuses on impairments in function due to multisystem "post-exertional neuroimmune exhaustion" (PENE) rather than the chronic central fatigue of CFS. So the main division here seems to be whether patients experience PENE. I haven't cross examined in detail yet but I have a hunch that Canadian criteria for post-exertional symptoms may be slightly less strict than PENE.
According to a study (http://www.biomedcentral.com/content/pdf/1756-0500-4-139.pdf) about half of those who meet Fukuda CDC criteria will meet Canadian criteria, at least those who where "identified in GP databases using a READ-code based algorithm", something which I have doubts about since there is no guarantee the patient volunteered all their symptoms or that the GP's wrote down all the patient's symptoms (especially if skeptical or even dismissive about them). But this gives us a roughly idea that the "wider CFS community" could be split in half over this issue.
According to the revised Canadian definition, "Within a group of individuals diagnosed with CFS, Jason et al. (1999a) found that post-exertional fatigue or malaise for individuals with CFS ranged from 93.8-40.6% depending on how the question was asked." The Canadian definitions of post-exertional symptoms were always more descriptive than CDC/Oxford, and the new ME criteria carries on this fine tradition. Obviously there is some ambiguity in the term "post-exertional fatigue/malaise" (which biopsychosocialists try to portray as the effects of deconditioning and/or psych-behavioural disturbed homeostasis), and those that experience PEM do not necessarily meet criteria for PENE and those that do not meet PENE criteria cannot be diagnosed with ME.
So what happens to those people who don't meet either ME or Canadian criteria? Unless there are major changes in the CFS labyrinth they may remain stuck there, and so will everyone else as well if the international ME definition doesn't facilitate change for ME patients. I don't think anyone who doesn't meet ME criteria should be abandoned for having an alleged biopsychosocial illness. The problem with CFS criteria is that it has always been relatively non-specific, a wastebasket diagnosis with potentially multiple types of medical conditions and lumped in with overlapping psychiatric diagnoses. Canadian and now international ME criteria has been a step in the right direction for carving off a large slice of this heterogeneous pie and loosening the stranglehold of a broad approach.
If there really is a general fatiguing biopsychosocial illness as conceptualized by Oxford criteria and Reeves' CFS, the split will be helpful for them too. However, much of the cited research in this new international ME definition used Fukuda criteria for CFS. Those that don't meet ME criteria may still have similar pathology and/or have a condition that isn't helped by the biopsychosocial approach. Having seen how "psychogenic/somatization/functional dismissal by default" has plagued the ME/CFS community for decades, I am cautious about leaving the non international ME and non Canadian ME/CFS patients out in the cold, but I meet both so naturally I'm going to be more concerned about patients and research that better reflect me.
Sounds like there's more yet to come:
"It is important to note that the current emphasis must primarily remain a clinical assessment,
with selection of research subjects coming later. For this reason the panel is developing
Physicians Guidelines, which will include diagnostic protocol based on the International
Consensus Criteria and treatment guidelines that reflect current knowledge."
Note the comment on the same page:
"Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be
removed from the Reeves empirical criteria and the National Institute for Clinical Excellence
(NICE) criteria for chronic fatigue syndrome."
I agree that this should be great news! I guess the most important questions now are: will the ICC be widely accepted and used by the research community? Will NIH, CDC and other authorities accept these new criteria?
I am so curious regarding how they came about. During the NIH Workshop in April I didn't really catch any hints that this was in the works. Did you? Does anyone know if the panel has been in a dialogue with NIH/Mangan during the process?
Also wondering about the missing names. Jason is frequently cited, as someone mentioned, but is not one of the authors. Does his absence mean anything? Peterson's? Komaroff's? Vernon's?
I guess we will know more when we start hearing reactions/comments from players in the field.
Can we get media to pick up on this?
It is VERY important that all of us either mail or hand deliver this criteria to our doctors. We have to be the ones that make this stick.
Guidelines for practitioners and treatment suggestions: woo hoo!
Finally, I know doctors will love this. No matter the name, a main problem is doctors have no clue what to do even if can identify it. Physicians are trained to fix things. If they can't fix it, they feel inadequate, like a failure, and some blame the patients. So, with treatment guidelines, they can do something. Maybe doctors will not say, "oh and here comes another one of those" when they see us. (as Dr. Anthony Komaroff described at SoK meeting in referring to how some doctors respond.)
By the way, Komaroff was involved in naming the illness in 88. I don't fault him for that. But this may be one reason he did not participate or was not invited on this one. Only idea I have on Jason is that he is not doctor of biology. He is psychologist. This criteria was about biology and what is seen in clinical care. So, his expertise may not be germane to claiming what symptoms identify the disease. He may be in position to find fault with others, but to assert what does identify the disease is not in his area of expertise.
Wonder how long it will take to get the physician guidelines.
You can also try a Google Site Search
Separate names with a comma.