One thing that I'm not clear on, and I wonder if anyone can clear this up for me?
The WPI study says they selected patients using the Fukuda and Canadian criteria...
does this mean that each patient has to fulfill both criteria, or does it mean that that some patients fulfilled the Fukuda definition, and some the Canadian definition?
Although, I think that this question is a little redundant, because the WPI were testing for physical signs of organic illness anyway, so they were basically narrowing down the patients to an organic illness which has an effect on the body at the cellular level.
Bob, I am still unclear on this point, too, that is, did
all WPI patients fulfill
both Fukuda and Canadian?
On 12 October I wrote to Dr Judy M and asked:
"I have received a query about the criteria used for this study.
I know you must be snowed under but I'd be very grateful if the criteria used for the study could be clarified, please.
(Our UK NHS site says: People with CFS had been diagnosed using standard criteria (1994 CDC Fukuda criteria and 2003 Canadian Consensus Criteria), and all had severe disability, prolonged disabling fatigue, cognitive defects and immune system abnormalities. They came from areas in the US with reported outbreaks of CFS.)
Is this correct?"
On 30 November, (with an apology for the delay) I received this response:
"This statement is correct with the exception that the patients came from all areas of the US including but NOT limited to reported outbreaks of CFS"
which doesn't answer the point, per se, because I should have asked specifically for that to have been clarified.
For the Swedish Gottfries study, co-funders, ME Research UK, have said, on their website:
http://www.meresearch.org.uk/research/projects/xmrvsweden.html
"The researchers will retrospectively test previously
stored samples from 3 groups of patients (20
Fukuda-defined ME/CFS, 20 fibromyalgia, 20 irritable
bowel) and 20 controls.
In addition, they will prospectively test samples from
120 ME/CFS patients (defined on the Fukuda 1994
and the Canadian 2003 criteria, similar to patients in
the original 2009 report in Science), who will also
have functional assessments."
I have a Swedish contact who is participating in this study and has given blood who has told me that they, themselves, fulfill
both Fukuda and Canadian. But again, it is unclear to me whether the Swedish study is testing samples from patients who
all fulfill
both or whether some will meet Fukuda, only.
I did enquire whether patient information sheets in relation to this study were given out, but apparently not.
Suzy