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	-

A message to Jamie Deckoff-Jones MD - Why antiretrovirals are a horrendously stupid idea without a quantitative test

Imagine you aren't feeling well. You go to the doctor, they run some tests, and it turns out you have a tumor. Well... your physicians aren't sure if you have a tumor or not, but they sent some of your blood to a lab, and a non-FDA approved test said you might have a tumor. Maybe. When your blood was sent to other labs, they couldn't find anything.

And even if you do have a tumor, you have no reason to believe that its actually causing a disease-- it very well could be benign. They dont know how its effecting you, if at all. Technically, they dont even know where it is.

But good news! They have a drug that works on these kinds of tumors in tissue culture... but no one has tested these drugs on your kind of tumor in small animal models, much less non-human primates, much less valid clinical trials on humans.

And even if you take this drug, there is no way of objectively measuring whether it is working or not. Technically, it could be making the tumor worse, but again, we can't measure 'better' or 'worse' objectively, so...

Oh, and btw, the drug they have to 'treat' you has severe side-effects. A 'successful' treatment course will almost certainly ultimately lead to liver and/or kidney failure (assuming you aren't hit by a car before then), plus a host of other side effects along the way.

Would you take this drug for your 'tumor'?

Now read the text above, but replace 'a tumor' with 'XMRV'. Would you confidently take antiretrovirals?


Far too many Chronic Fatigue patients are, and I will try to explain exactly why this is a horrible, horrible idea

Oh, I am sure Jamie Deckoff-Jones will refuse to acknowledge this in any meaningful way, as she always does with reality.

That is not how science works. Thats how we get drug resistant XMRV right out of the starting gate, assuming it is a real, harmful pathogen. You would think that someone like Judy Mikovits would understand basic fucking retroviral population biology, and would speak out, LOUDLY, against this, but apparently she is a moron on many, many, many levels.
Posted by: ERV | June 14, 2010 8:10 PM

And this makes it ever more so clear why they pushed their shitty cytokine-profiles study – they need some form of test to push an anti-retroviral treatment. Sorry, this is not scientific, this confirmation-bias driven woo.

Jamie Deckoff-Jones MD, Dr. Judy Mikovits and the Cuckoo Bananas Anti-Vaxxers

Thanks to her completely self-unaware comment on Trines site and zero internet skillz, I saw on her Facebook page that she 'likes' an anti-vax group, 'Autism Mothers'. 'Autism Moms' advertises for BioRay. BioRay is buddy-buddy with Mikovits and the WPI. Mikovits took time out of her busy research schedule to speak with Andrew Wakefield and Jenny McCarthy at AutismOne, while WPI is run by the Whittemores, a couple of folks who let their daughter pass up MMR (which youre supposed to get as a toddler) until she was 17, who now blames her 'relapse' of 'CFS' after she was 'cured' by 'yoga and homeopathy' on the MMR. The WPI, a 'legitimate scientific organization' just hired Dr. DJ.

Oh my, what have we gotten into.

That was your best shot? When certain people disagree, you know you are on the right track:). And thanks for the heads up about FaceBook. I am a newbie and it is definitely creepy.

Jamie Deckoff-Jones
http://treatingxmrv.blogspot.com/

Posted by: Jamie Deckoff-Jones MD | March 23, 2011 11:25 AM

Yeah Jamie, better hide your cuckoo FaceBook anti-vax connections. Don't let others see what friends you have.

What you [Deckoff-Jones] have written, from what I read from your site, is not based in science. It is based on your personal bias and cherry picking.

Posted by: MI Dawn | March 23, 2011 1:31 PM

Could not have said it better myself.

PSA from Jamie Deckoff-Jones MD

In our latest series of Public Service Annoucement about major health concerns from Jamie Deckoff-Jones MD (not to be mistaken with cranks who overestimate their own knowledge and ability, and underestimate that of acknowledged experts while insisting that their alleged discoveries are urgently important or other forms of scientific bankruptcy) we bring you:

ITS THE VACCINES!!!!11!!ONE1!

Here it is: I think that simple animal retroviruses, endogenous and exogenous, were introduced into the human population in the form of live attenuated vaccines. The first outbreak of epidemic neuromyasthenia was in 1934 at LA County Hospital, 2 years after the first paper was published on the use of the Yellow Fever vaccine in humans, a live vaccine that was produced in mouse brains. Killed vaccines produced in rabbit spinal cord was used in the late 19th century for rabies. There also may have been low level natural zoonoses prior to that, nature's normal process. The vaccine industry has continued to do essentially the same things in a more refined way into the present day, even though it should have dawned on them by the late '70's that there might be a serious problem. They have persisted despite huge anecdotal evidence that vaccines are harming large numbers of people (in addition to the good that they do). Furthermore, many new biomedical "advances" have put the human species at further risk, e.g. xenografts, xenotransplants, hybridomas, chimeras, designed to, or having potential to fuse human DNA with that of other animals. It's a dirty little secret that the biomedical industry doesn't want to look at.

We congratulate Jamie Deckoff-Jones MD on becoming a fresh member of the Anti-Vaxxer crank society.

Unfortunately Jamie Deckoff-Jones MD doesn't speak out about The Real Truth!©™, that occam's razor quite clearly says that nature and evilution evolution are not capable of creating pathogens and therefore the first, prime and sole suspect for all diseases must be vaccines. So I made little infographic to condense it down:

Congratulations to Jamie Deckoff-Jones MD for collecting the truly overwhelming amount of evidence implicating Zoonotic Retroviruses From Vaccines! as the cause of her disease and making an absolute airtight case. And kudos for having the intellectual capacity to connect the dots, which enabled her to make this amazing scientific break-through – while others are hiding because they are afraid of The Real Truth!©™! She found one case of vaccine use that happened two years before the first recorded instance of her disease (or the first record that she could find) and in her mind it makes it abundantly clear that it must have been Zoonotic Retroviruses From Vaccines! She shuts the case! Go ahead and call this a simplistic baseless fearmongering speculation aimed at garnering the admiration of fellow patients. You would be so wrong, because her bright example of sticking it to The Man should be a guidance to us all! She showed us all – far far beyond any reasonably doubt – that scientific advantages are causing our downfall!  I applaud her scientific and medical integrity to come to the public with such an important and well researched theory!

So, if you have been injured by xenografts, xenotransplants, hybridomas or chimeras, or suspect you will be in the future, head over to Jamie Deckoff-Jones MD to find likeminded mindless minds in a desperate yet somehow futile search of a cure. And stay tuned for how to cure any illness by giving anti-retrovirals.

XMRV VP62 Mikovits Infographic

This is the most recent claim by Jamie Tunnel-Vision Confirmation-Bias Deckoff-Jones MD (a self identified friend of Dr. Judy Mikovits, whose old blog's comment section on occasion was a publication outlet of Dr. Mikovits):

We clearly are not treating one specific XMRV, at least not the chimera created in Dr. Silverman's lab in the process of looking for the one specific virus. From the studies to date, it does seem clear that VP62 or anything very close to that is not our problem.

It is unfortunate that Dr. Judy Mikovits does not publish these claims herself, so we will have to do with what Jamie Deckoff-Jones MD has to say in that matter.

And again, this is what the Lombardi et al study had to say, where Dr. Judy Mikovits was principal:

In all positive cases, the XMRV gag and env sequences were more than 99% similar to those previously reported for prostate tumor–associated strains of XMRV (VP62, VP35, and VP42) (fig. S1)

So to dispel any confusion, I created a little infographic, explaning the current Mikovits/XMRV/VP62 defense, as used by Jamie Deckoff-Jones MD:

So when the WPI published sequences in June and August 2011 without Silverman's involvement, they turned up to be still VP62 – go run BLAST on them for yourself.

Hope this clears up things a bit.

(Some) clear words from Jamie Deckoff-Jones on XMRV

Here is the reality and the context for why I write this particular blog entry: My email inbox is filled with so much pain and confusion, as patients try to figure out what the BWG study means to them. I feel it is my obligation to both these patients and the larger community to share my opinions. I think what the BWG results mean is that all the XMRV/HGRV testing done at VIP Dx has been and is now null and void.
…
I have watched this whole thing unfold and kept quiet because I hoped that management at the WPI would come to their senses, before it was too late. They have not, so I now feel obligated to share what I know.

Remember, that is the personal opinion of Jamie Deckoff-Jones. But I commend her on her clear words on this. Now we need something official from the WPI. We need to know what is going on. As I have commented:

Being wrong is OK, but we need to know what went wrong.  Nothing is more difficult than orderly reatreat from an unholdable position. – Clausewitz

Jamie writes on about testing at WPI vs. testing at VIP Dx lab:

Keep in mind that Dr. Mikovits works at the WPI research lab, which is a separate lab from the clinical, commercially-oriented VIP Dx lab. She believes that she has reproduced her original work many times and found evidence of infection in the patients who were previously found XMRV positive. But she never found any single patient positive on every date tested by every assay. So there has been an assumption that there were false negatives in the WPI research lab for some time. Another important thing to keep in mind is that WPI routinely used several tests on each sample, whereas VIP Dx used different, more limited testing, on the samples they received, testing that apparently was never truly validated against WPI methods or performed with appropriate controls. I personally don't know why this was the case or how it happened. Obviously the decision to sell a test was a very poor one, hindsight being 20/20. It left the institute with a difficult conflict of interest.
…
Now it appears the WPI research program is getting thrown under the bus, but VIP Dx is still up and running, now minus XMRV testing. None of this means that we don't have HGRV's, or that some of the work that came out of the Mikovits-led research lab wasn't correct. What it does mean is that there is no validated test for clinical, commercial use.

I think this is where Jamie is deluding herself – but this is all wobbly believe and hear-say. We need to take it step by step, and we need to find out conclusively what the testing at the WPI was worth and might still be worth. I'm afraid it might not be worth much, but guessing is not good enough and we need to know.

And it means we are now at risk of losing all the gains we've made because of poor managerial decisions.

If there were real research gains, that is.