ME/CFS – The Good, The Bad and The To Be Determined

If you follow the usual blogs about ME/CFS, you will come up repeatedly with the same "players" in the field of ME/CFS. So I thought it is a good idea to compile a list with my opinions on several of those people, as a reference.

Whenever there is reason for a differential appraisal (both "good" things and "bad" things to mention) I will try to do so (Sarah Myhill being a nice case in point).

As always, this is
a) my personal opinion – YMMV
b) work in progress, so I will revise and amend it over time.

Therefore take it with some grains of salt.

And if you feel there is an error somewhere (or that some important information is missing), feel free to write a short comment!

(And BTW, the sorting within each list is alphabetical, by first name)

And, oh, TBD stands for "To Be Determined". These are basically points where I need to know more, before I can make a call (one way or the other).

"The Solid"
- because I think the following people are trustworthy (and helpful) most of the time:

Name	What's Good	What's Not So Good	TBD
Alan Light Kathleen Light (Research) University of Utah	1. Solid research with exercise challenges and gene expression. [1] [2] 2. Alan Light has a genuine passion to research pain and fatigue.	-	-
Christopher Snell (Research) University of the Pacific	1. Solid research with exercise challenges [1]	-	-
David Bell (Research) Retired Pediatrician	1. 12 and 25 year follow-up studies in the Lyndonville cohort [1]	(In hindsight) Should have been more critical of XMRV	-
Julia Newton (Research) Newcastle University	1. Proper differential diagnosis for ME/CFS patients [1] 2. Research into POTS	-	-

"The OKish"
- because I haven't seen those people commit any major blunders.

Name	What's Good	What's Not So Good	What's TBD
Anthony Komaroff	Only makes claims he can back up with facts. Makes it clear when he is talking about speculation.		His research into the brain's involvement in ME/CFS may be very excellent. But what is its practical (diagnostic? therapeutic?) application
Daniel Peterson	His involvment in Simmaron Research is a definitive plus for all ME/CFS patients	His initial involvement in XMRV was not so good (though he was anything but the driving force)	His involvement in Ampligen
Lucinda Bateman	Contributes to good research with her ME/CFS patient cohort	Could have more critical distance to the psychosomatic school [1]	Does a "by the book" symptomatic treatment addressing all individual symptoms.
Nancy Klimas	Contributes to good research with her ME/CFS patient cohort		Her work involving NK-cells (natural killer cells)

"The (may or may not be) OKish"
- because I think I have reason to be cautious

Name	What's Good	What's Not So Good	What's TBD
John Chia
Jose Montoya	His focus on Herpes-Viruses.	His focus on Herpes-Viruses.	His focus on Herpes-Viruses.
Martin Lerner
Robert Suhadolnik		His research into "2-5A synthetase/RNase L" pathways seems to have lead nowhere with regards to ME/CFS.

"Those who have the appearance of quacks"
- and I do not trust a word from them without checking it thrice:

Name	What's Good	What's Bad	What's TBD
Jacob Teitelbaum	Addressing sleep problems	Seems to lack basic medical understanding  in some areas [1]	-
Jamie Deckoff-Jones	Nothing I'm aware of	1. IMHO she is an example of 100% pure and unadulterated woo. 2. Disciple of Mikovits	-
Judy Mikovits	Nothing.	1. Was the lead in what looks like intentional contamination to fabricate/falsify study results in Lombard 2009 2. She loves to tell stories – that have little or no relation to reality – to impress CFS-patients	-
Kenny Meirleir	Nothing I'm aware of	1. Was involved in the XMRV disaster [1] 2. Peddles (highly dubious) urine tests [1] 3. Claims that close to 80% of his patients reported “complete clinical recovery” after Ampligen treatment [1]	-
Martin Pall	-	1. Toxins, Nitrostress and somesuch woo are supposedly everything one needs to know 2. Proponent of all kind of woo like "electromagnetic field (EMF) hypersensitivity (EHS)"	Doubtful that any of his research will stand up to scrutiny (But then again: Whenever there is any doubt, there is no doubt.)
Michael Maes	Some of his therapeutical interventions weakly resemble an "Paleo Diet"	1. Most of his research is "all over the place". 2. Has written a paper together with Gerwyn/V99.	Doubtful that any of his research will stand up to scrutiny (But then again: Whenever there is any doubt, there is no doubt.)
Paul Cheney	Nothing I'm aware of	Everything he says seems suspect to me.	-
Sarah Myhill	1. "Caveman Diet" / "Stone Age Diet" (properly known as "Paleo Diet") 2. Stopping the usage of counterproductive medication	95% of her "CFS Book" (see PDF) scores high on the QDC (with the noted execptions left and right).	1. Vitamin B12. Maybe. 2. Her research (with collaborators) into mitochondrial problems may or may not be based in reality – hard to tell
Simon Wessely (and his fanclub)	Nothing I'm aware of	1. Peddler of idealistic BS [1] 2. One of the main proponent of the psycho-pathologization of ME/CFS patients, tries to establish psychological treatment as the sole treatment for all ME/CFS patients 3. Libels the entire ME/CFS patient community	-