Sunday, December 16, 2012

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:
NameWhat's GoodWhat's Not So GoodTBD
Alan Light
Kathleen Light
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
University of the Pacific
1. Solid research with exercise challenges [1]--
David Bell
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
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.
NameWhat's GoodWhat's Not So GoodWhat's TBD
Anthony KomaroffOnly 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 PetersonHis involvment in Simmaron Research is a definitive plus for all ME/CFS patientsHis initial involvement in XMRV was not so good
(though he was anything but the driving force)
His involvement in Ampligen
Lucinda BatemanContributes to good research with her ME/CFS patient cohortCould have more critical distance to the psychosomatic school [1]Does a "by the book" symptomatic treatment addressing all individual symptoms.
Nancy KlimasContributes to good research with her ME/CFS patient cohortHer work involving NK-cells (natural killer cells)

"The (may or may not be) OKish"
- because I think I have reason to be cautious
NameWhat's GoodWhat's Not So GoodWhat's TBD
John Chia
Jose MontoyaHis focus on Herpes-Viruses.His focus on Herpes-Viruses.His focus on Herpes-Viruses.
Martin Lerner
Robert SuhadolnikHis 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:
NameWhat's GoodWhat's BadWhat's TBD
Jacob TeitelbaumAddressing sleep problemsSeems to lack basic medical understanding  in some areas [1]-
Jamie Deckoff-JonesNothing I'm aware of1. IMHO she is an example of 100% pure and unadulterated woo.

2. Disciple of Mikovits
Judy MikovitsNothing.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 MeirleirNothing I'm aware of1. 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 MaesSome 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 CheneyNothing I'm aware ofEverything he says seems suspect to me.-
Sarah Myhill1. "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 of1. 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

1 comment:

  1. very helpful, I'm always wondering about Myhill, Teitelbaum et. al. I've already spent so much money chasing treatments they recommend, I just don't know, if gets so confusing. Thank you.


Comments are most welcome! But please:

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