• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Article: The Best XMRV Study Underway? Dr. Singh Talks!

Yes, it's quite amazing that there has been so little research on the pronounced sex ratio in this illness - someone coming across the illness for the first time might think it was one of the most striking aspects of this hard to fathom disease.

As an alternative to the hysteria hypothesis, could it be down to the immune system? Women generate stronger immune responses than men (the vast majority of autoimmune diseases are much more common in women than men). I gather this difference is immune systems is true for mammals and I other animals too, as testosterone can suppress immune response. The immune system, and particualarly the immune system over-reacting, is often linked to ME/CFS - so if women have stronger immune reactions you might expect more women to get ME.

As for gender differences, am I right in thinking that men are even more impressed by Dr Singh than women are?

More seriously, it's frustrating that she's not giving much away about the results of her research; it's very professional of her and I think the right thing to do, but there is a hint there could be some incredibly important results coming out of her work.
 
Yes, it's quite amazing that there has been so little research on the pronounced sex ratio in this illness - someone coming across the illness for the first time might think it was one of the most striking aspects of this hard to fathom disease.

As an alternative to the hysteria hypothesis, could it be down to the immune system? Women generate stronger immune responses than men (the vast majority of autoimmune diseases are much more common in women than men). I gather this difference is immune systems is true for mammals and I other animals too, as testosterone can suppress immune response. The immune system, and particualarly the immune system over-reacting, is often linked to ME/CFS - so if women have stronger immune reactions you might expect more women to get ME.

As for gender differences, am I right in thinking that men are even more impressed by Dr Singh than women are?

More seriously, it's frustrating that she's not giving much away about the results of her research; it's very professional of her and I think the right thing to do, but there is a hint there could be some incredibly important results coming out of her work.

I wonder how what other kind of disorders have female prevalence? Its a fascinating question.

As to other question of gender differences - there are several reasons to be impressed by our beaming researcher :D
 
Does somebody perhaps have a little researcher-crush? ;)

I have read a fair amount about autoimmune diseases in the course of my wondering about what the hell ME/CFS really is. They tend to be much more prevalent in women. There is something a little more vulnerable about the female immune system, having to do with the need to be able to carry a child to term. I'll let the actual scientists around here explain that better - I'm really no scientist, just a general-purpose know-it-all :cool:

ME/CFS may yet be considered an auto-immune disease - whether it is triggered by "Pathogen X," other pathogens, or other "insults" - environmental toxins and what-not, or a combination of the above.
 
Loved the TWiV podcast, best one yet.



I doubt that they are being medicated for ADD/ADHD. Maybe depression or something else. The symptoms for ADD/ADHD are pretty much EXACTLY the opposite of CFS.

Isn't that wired brain feeling common to both? If I was a little younger I'd probably have both diagnoses (too old by the time ADD/ADHD became "popular" enough to be diagnosed here in Hicksville, I just needed a good beating :Retro tongue: )

I've heard some subsets of CFS patients using ADD/ADHD meds, Dexamphetamine, Ritalin etc - what is the rational there?
 
Loved the TWiV podcast, best one yet.





Isn't that wired brain feeling common to both? If I was a little younger I'd probably have both diagnoses (too old by the time ADD/ADHD became "popular" enough to be diagnosed here in Hicksville, I just needed a good beating :Retro tongue: )

I've heard some subsets of CFS patients using ADD/ADHD meds, Dexamphetamine, Ritalin etc - what is the rational there?

They do work for some people..I don't how many...they are brain stimulants - I don't know much about them but I kind of think of them as supplying energy to the brain. I actually like to try one and see how its works out. I actually do pretty well on caffeine - can think better, libido even goes up a bit but then I get shakey and it gives me IBS symptoms.
 
I wonder how what other kind of disorders have female prevalence? Its a fascinating question.

From what I've read, it's something that is only just coming into focus. I saw those figures on 1.3x more women getting thryroid cancer; for autoimmune it's even higher e.g. 2:1 for MS and up to 9:1 for some others such as Rheumtoid Arthritis (though a few autoimmune diseases are predominantly male).
 
Hey Ladies and Germs,
Regarding the men vs. women with M.E. and or CFS. 95% of the sick gulf war veterans are men. and Garth Nicolson
backed up my claims from CNN that GWS is VERY similar to 'CFS'. Long before any knowledge of a possible XMRV or other single virus.

even a high ranking mole at one of the closed door meetings at Congress in 1996
with willy wonka Reeves testifying for the CDC, called me at home and said "you won't believe what happened today", that a Congressman asked Reeves if there were any similarities
between CFS and GWS and that Reeves paused.....and looked around behind him at the people observing his testimony....and the mole told me that the look on Reeves face was if he was looking for who might 'rat' him out to the public...and Reeves then said, "there was a Mr. Hennessy and his group that has been right early and often...GWS is not just similar to CFS....it is virtually identical..." I only claimed
that they had many similarities. i never said identical. But Garth did a survey of some 35 or more symptoms, and that the 650 gulf war veterans that he tested had come within 5% of the same answers as typical CFS patients.

I didn't then, nor do i now, trust government officials on virtually anything due to our track record with government bureaucrats and the truth...but, two weeks later, i saw Reeves on the CBS evening news, and he was cornered somewhere in DC. and the reporter asked him directly about links between CFS and GWS and he repeated most of what the mole told me. i have him on videotape saying "GWS is not just similar to CFS, it is virtually identical!"

and roughly two years after that, i received word from a military official that worked with the CDC on issues involving new recruits, and this military officer told me that Reeves was doing studies on the saliva and perspiration of recruits being left in the field for 72 hours with NO outside help, and that they were looking for blood, saliva, or perspiration and BP markers for FUTURE soldiers to see if they could identify FUTURE GWS patients before they actually went into battle... (by this time, close to 25% of GWI soldiers had made some kind of complaint or request for partial or complete disability along the lines of symptoms checklists that Garth Nicolson devised.

Eventually, i heard that there was close to 300 million dollars put aside for treatment and investigation of the cause of "Gulf war illnesses"
(they were no longer calling it Gulf war syndrome)

and Reeves official line,...i will never forget this....he said, and the Pentagon repeated it early and often

"There is NO, ONE, NEW and UNIQUE Illness known as Gulf War Syndrome"

Most of us NEVER claimed that it was NEW, OR ONE illness, or that it was UNIQUE!
so the mother F*(*^#$S could truthfully say what they said,
and guess what the PRESS wrote the next day in all the papers..

"Gulf War Syndrome doesn't exist!" which was little Simon the Weasally's take for the past 19 years...
Deliberate misinformation..the old KGB couldn't have been more proud if PRAVDA wrote something similar on the front page!

I lived through the Vietnam War in Japan. the distrust of the average wounded soldier and their doctors in Vietnam, the Phillipines,
and Japan was SOOO damn high. that many soldiers who had the front of their foot blown off by a cheap $3 home made north vietnamese land mine, had doctors make special plaster casts on the front of their foot, with heroin inside, with instructions on
where the soldier could drop off their "package" back in certain cities stateside for 40k to 50k so that they could get a start on getting a house or bankroll, because they knew how long it would take to get any help through the VA. and then with Agent Orange, it took
literally 24 years for them to get anything..and then they got about $4400 a piece! less than 6 months salary back then for an entry level job.
Now, we have something like 285,000 sick soldiers from GW1. and many of them who are getting disability are getting it with CFS or FMS
and a few with MCSS diagnoses. it is criminal!

Not to pour any water on the XMRV crowd. i realize how desparate so many people are. But, i have gone through more than 20,000 letters, phone calls, emails, and at least 1100 personal meetings with so called M.E. or CFS and FMS patients, and i have a hard time believing that this nasty, and from what i hear, fast growing, retrovirus could have destroyed soo many lives in sooo many countries,
and have modern science still having such a hard time isolating it. Not, that i have a hard time finding the CDC utterly incompetent
and stunningly dishonest.

I believe in Rich Vank's work more than most of the so called work product out of NIH or CDC over the past 2 decades, and this Dr. Singh
looks pretty sharp (in more ways than one!)
But, please don't get so revved up about XMRV. It will be worth it for nothing else than it scared the pants off all the middle aged men at CDC and NIH to get off their behinds and do some serious work.
But, if XMRV is found out to be mostly a passenger, or not as ubiquitous as WPI studies originally thought, then all is not lost.
I remember 20 years ago, the pictures of Dr. Bell, Dr. Cheney and Dr. Defreitas on the cover of the CAA chronicle, they acted as if Columbus had just discovered a new continent...and when other mucky mucks couldn't duplicate her work....we were labeled as the biggest hypochondriacs since the first MS. patients. One MS patient mailed me a photo of a special MS wheelchair that had TWO leather straps across the front...one across the waist...and one across the chest...so that the Devil would half to work harder to get the hysterical woman with MS to slither out of her wheelchair...

Remember they locked up Galileo,
and Pasteur was a nutcase for saying "the antigen is nothing, the terrain is everything".

and Samelweiss was proven correct.
and lastly,
"All truth goes through at least three steps"
First, it is ridiculed,
Second, it is vehemently denied

Third, it is accepted as being self evident..."

ciao for now.

This is VERY interesting because I've inherited ME from my grandfather who was in the war. I knew al along this wasn't from rats as they clamed, but that it was from chemical warfare. I KNEW it!
 
Ritalin is a super stimulant. It is also given to people with narcolepsy. My worry (no scientific backing to this just opinion) is that it would give people with CFS an artificial burst of energy which given that they are still sick would push them to do things their body can't handle and cause damage. I have ADHD (my sister has CFS) and take it.
 
Thanks for your input on using psychiatric drugs for many uses, some of which aren't exactly intuitive. I have been subject to trials of SSRIs, etc, in a search for pain relief among other things. None have worked and all have had horrible side effects and were a nightmare to discontinue.

I had the interesting experience of leafing through the current formulary in my HMO doc's exam room the other day. I found several SSRIs and other psychiatric drugs under the "analgesic" heading which made my jaw drop. These things are not like aspirin or other pain meds by a long shot - they affect neurotransmitters in very profound, and often very catastrophic, ways. What a shock that was.

On a final note, I just listened to the podcast and I was dumbfounded to hear one of the participants trot out seasickness as a perfect example of a cluster outbreak of illness. Coming up with this as some sort of analogy to the outbreak of CFS in, say, Tahoe was beyond insulting, and it was said in a manner that was in itself insulting. Sort of the ol' wink, wink, nudge, nudge with his colleagues in attendance. Everything was smooth sailing until actual patients entered consideration in the discussion.

To compare CFS, a complex neuro-immune illness that I've personally had for 25+ years with a self-limiting experience that would require close personal contact with other sufferers beggars the imagination. What does he think we do, watch TV and go on the internet and send hard questions to the moderator to reinforce our delusions, since close personal contact with others becomes unsustainable for many of us?

This comment and example revealed a profound bias on his part, so fundamental to the prevailing worldview among researchers. I guess we were supposed to feel reassured by the following assertions that seasickness is very real and even *gasp* life threatening after the sucker punch of that demeaning analogy in the midst of serious scientific discussion. Here, folks, is the elephant in the living room, and he's pretty rude.
 
I know I do. First it was Dr. Klimas and Dr. Bateman, now Dr. Singh too. :D

Quite a shame you can't meet Dr. Metzger from REDlabs, Belgium. Then you'd have four crushes.

(MDCS=Multiple Doctor Crush Syndrome, mostly seen by patients who don't have the energy to pursue an active lovelife, and who's contact with the other sexe is often limited to the cute doctors they meet irl or url)