usedtobeperkytina
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Listen to the interview here: http://holyhormones.com/womens-heal...ises-question-is-cfs-an-autoimmune-disease-2/
Tina
Tina
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Dr. Friedman - The Future for CFS Research
Wednesday, 12 October 2011
Ken: Well the research definition that seems to be used is something called the Fukuda case definition, Fukuda et al, which dates back to 1994, and that definition has been used since that date forward. It is much more restrictive a case definition than one would like to see used on patients, but it helps to define a patient population that is relatively suffering from similar symptoms and so therefore for research purposes you are apt to get results that are clearly defined
Interviewer: So it's a conservative definition
Ken: A conservative definition that may exclude some patients and therefore is not workable in a clinical situation.
In the clinical situation, you want something that is more relaxed, or a more inclusive definition, and there are actually a couple of those. There's what's called the Canadian case definition, which was developed in 2003, 2004, and that seems to be very good at identifying patients and their key symptoms, and having them diagnosed as having Chronic Fatigue Syndrome and then there is a brand new one that has been developed in 2011 that is called the International case definition, and that one is essentially too new for anyone to have any sense of how it will fare, as either a patient case definition or as a research case definition.
http://www.mefmaction.com/index.php...search-news&catid=72:research-news&Itemid=360
Ember - have you tried discussing this with Dr Friedman? His views might have changed somewhat since October (I haven't listened to the interview yet, so I might be wrong).
Advocate for the adoption of the Canadian Consensus Document;
Promote a new name for this illness that is more appropriate and does not trivialize or give misconceptions
(http://coalition4mecfs.org/JoinUs.html).
Is he saying or referring to some program (for ME/CFS) the CDC is calling, giving the title "initiative for change"? If that's not it then surely he's not saying we should wait for the CDC to find the desire, drive or motivation to inspire an "initiative for change". The CDC has only responded when driven by others to do so and most of us know the history of the CDC's initiatives involving ME/CFS.Unfortunately, I have no reason to believe that Dr. Friedman has changed his views since October. He now advises patients to wait on the CDC's initiative for change.
Is he saying or referring to some program (for ME/CFS) the CDC is calling, giving the title "initiative for change"? If that's not it then surely he's not saying we should wait for the CDC to find the desire, drive or motivation to inspire an "initiative for change". The CDC has only responded when driven by others to do so and most of us know the history of the CDC's initiatives involving ME/CFS.
Well, I think the important issue for the patient community is to support the work that is being done. And unfortunately a lot of the work is not being done by the government. It's being done by the private sector. And I think that it's important that patients proceed with a positive outlook. And I know that the primary, or one of the primary issues for patients is that the name is a disgraceful name of the disease. But as the CDC has recently gone on record as stating is that when we understand the disease better the name will change by itself. And so I would ask the patient community to be more positive and not spend time on trying to change the name of the disease at this particular juncture but to support the organizations that are trying to move the research and treatment forward for chronic fatigue syndrome. (56:35 57:46)
How do you expect for him to reconsider his views if no one brings it up? He might be receptive if it is brought up tactfully.
Dr. Friedman's distressing comments aren't about changing the name but about the nature and use of case definitions. He claims, “Fukuda et al....is much more restrictive a case definition than one would like to see used on patients....so therefore for research purposes you are apt to get results that are clearly defined.” But this statement by Dr. Friedman is false.you have to pick your battles, and maybe Dr F just doesnt think that pushing for a name change is going to work out, and his energy would be better spent elsewhere.
Again, Dr. Friedman's statement is false.In the clinical situation, you want something that is more relaxed, or a more inclusive definition, and there are actually a couple of those. There's what's called the Canadian case definition, which was developed in 2003, 2004, and that seems to be very good at identifying patients and their key symptoms, and having them diagnosed as having Chronic Fatigue Syndrome and then there is a brand new one that has been developed in 2011 that is called the International case definition....
The case definitions drive the research, and you've simply proposed another one. This was Dr. Lipkin's solution for the XMRV study:My idea of a good study: The strongest immunologist studying this issue now (Dr. Klimas) needs to pick out twenty of her patients who have 1) three of the primary reported CFS symptoms, 2) overactive inflammatory cytokines IL-6 and TNF-a, and 3) and at least two obviously reactivated viruses....
I'm not sure why we stay wrapped around the axle over definition, name, etc etc.
- If we have a study in which we are sure to get the result we must be very clear about the criteria. They must be crystal clear, says Mella....
This is particularly important as it will be different doctors at different centers to take care of patients. Fluge and Mella therefore want to use the so-called Canadian criteria.
- We will go for the strict criteria. It shall be the greatest possible chance that the patients included really have ME and general exhaustion, said Fluge.