The XMRV tree

[Francelle]

[COMMENT][/COMMENT]Somewhere I read yesterday about imagining XMRV as the root of a tree. This caused some ideas which had been percolating in my head lately to produce the following picture.

Over the years there have been a lot of theories proposed about M.E./CFS and its potential causes. Protocols have been formulated to ‘treat’ the symptoms surrounding some of these theories. Yet as so often happens these theories become viewed as causative, so much so, that any other possibility becomes excluded from the equation in the mind of their proponents. Thus polarised views abound.

In the case of M.E./CFS many diverse findings have been isolated and each one adds to the complex patchwork of M.E. symptomology. Each is valid in itself ….but causative? ….that is the question.

What if it went something like this….and there is a lot more that could be added to this diagram but just for example……

(I don’t know that my diagram will reproduce here though). No it's not going to paste here so I will write it out - not so easy to picture though. The roots are obviously the cause, the trunk is an adjunct to the roots and the branches are symptoms. So often, aspects of the 'branches' have been postulated as being the 'cause' of M.E/CFS but I have always doubted that. Read from the bottom up).


BRANCHES

• Gut Dysbiosis – aka Kenny De Meirleir
• Glutathione Methylation theory – aka Rich Van Konynenburg, Amy Yasko
• Mitochondrial dysfunction – aka Sarah Myhill
• Pain sensitisation/amplification theory – Fibromyalgia – aka Daniel Clauw
• Enteroviruses – aka John Chia
• Brain Abnormalities/ SPECT
• Allergic symptoms/food intolerances/MCS
• Anxiety/Depression – Psychiatric – aka Simon Wesseley

TRUNK
+/- virus/bacteria/fungi/mollicutes/moulds etc


ROOTS
XMRV

 

[JPV]

One of the most frustrating things about this forum, is the constant insistence, by the vast majority of forum members, that XMRV is the cause of CFS/ME. There is no proof whatsoever of this is the case. Even Dan Peterson himself, has gone on record, numerous times, saying that the retrovirus could very well just be a passenger to another condition that takes advantage of a depressed immune system.

That being the case, this chart of yours seems to a very premature and speculative assumption of the situation... to say the least. In which case I really question it's value.

 

[Francelle]

Of course it's absolutely premature (I did use the preface of 'imagining') but it an interesting concept when nothing else in the past has ever entirely ticked all the boxes. This may not pan out either but retroviruses are not benign or at least the other two are not, so it is an another interesting 'theory' to throw into the ring!

 

[helen41]

I like it. I think the image of the branches really shows the constellation of symptoms people suffer from. Nicely done.

 

[alex3619]

Hi Francelle and everyone, I came to the conclusion a long time ago that many of the pet causal theories of CFS are probably describing pathophysiology - not the cause. I used to build models using systems diagrams of the kinds of things you have in your tree, but stopped when they wouldn't fit on butcher paper - it can get very complex.

It is correct that XMRV hasn't been proven to cause CFS, or indeed any disease. However, MLVs cause similar biochemistry in mice, and the 98%+ prevalence, if correct, is not consistent with a passenger virus. The passenger virus hypothesis fits with 67% percent though. Also, the passenger virus hypothesis does not take into account the probable neurotoxic envelope of XMRV. Since contamination is extremely unlikely to be the cause of the CFS findings, that really only leaves either causation or co-causation.

Causation has been discussed at length so I will mostly ignore it here. There have to be reasons why not everyone with XMRV gets CFS though. Genetic polymorphisms are the first choice here, and are frequently found in CFS patients. The second choice is co-infections. The third is pure chance - there are numerous diseases known to medicine that can have alternate disease paths and hence symptoms - these are critically dependent on whether or not the patient has Th1 or Th2 dominance. I am sure we could come up with a whole lot of other factors, but it is too early to be sure of any of them.

Now there is a small chance that XMRV is just a passenger, but its unlikely. If however this turns out to be correct, the extreme prevalence of XMRV in CFS patients will point to a specific immune susceptibility, and remains our best chance to unravel the biochemistry in CFS. At the prevalence of nearly 100%, I just can't see XMRV as a passenger though - how could it be transmitted so often to CFS patients and not to everyone else? Immune susceptibility does not go far enough as an explanation - too many CFS patients are infected. How come the immune compromised patient prevalence is only 10% and not 100%? It doesn't make sense with current data, but that doesn't mean the next study, whatever it is, wont come up with the explanation.

The idea that XMRV is the cause of CFS is a working hypothesis, no more. It is the best fit with the data from all theories of ME or CFS in history. This doesn't make it correct, only probable. Whether it is or it isn't, it is critically important to prove this. If it isn't, we can move the research on, using the clues we got from XMRV. If it is, we can look for treatment, and then a cure.

Bye
Alex

 

[Fejal]

I agree with JPV. Many viruses trigger CFS: EBV, MLV, XMRV. So to think it is just XMRV really is premature.

 

[dannybex]

Regardless of one's opinions, this thread should be moved to the XMRV section, shouldn't it?

 

[WillBeatCFS]

danny -- maybe not. This is really discussing the conceptualization of ME/CFS as a whole, not XMRV (except as part of that whole).

 

[WillBeatCFS]

JPV, would Francelle's idea be more palatable to you if "Roots said something like "underlying cause or infection" instead of XMRV? The picture certainly seems otherwise valid and concise (kudos!).

I agree XMRV as the root is currently speculative, though there are excellent reasons to suspect it. The only way to prove it, one way or the other, is to invest in quality research. Advocacy seems to be the only way we will get the funding and interest for such research.

Fourteen months ago I saw how long-time researchers and clinicians were growing weary and giving up. "AIYH" was becoming the accepted wisdom despite all the well-documented physiological abnormalities shown by researchers over the years. I saw little reason for hope -- for research, cure, treatment, or even respect.

If nothing else, Dr. Mitkovit's XMRV paper changed all that in a single day. Even if XMRV doesn't prove out as "the" cause, it has brought great benefit to ME/CFS:

• greatly improved visibility on the international research scene;
• new researchers -- many of them world-class;
• renewed emphasis on the physiological causation;
• a fair amount of positive press/information for the lay public on ME/CFS;
• increased dialogue between patients, researchers and the NIH;
• an unparalleled uniting of patients in effective advocacy (though still in its infancy); and
• the potential for increased funding for research.

Every one of these things has been desperately needed for a long time. We're still missing constructive reactions from CDC and the British NHS, but even they have taken cursory notice.

If XMRV does prove out, hoo-boy! Life, liberty and the pursuit of happiness (and effective treatment) will follow!! :victory::victory::victory:

 

[JPV]

JPV, would Francelle's idea be more palatable to you if "Roots” said something like "underlying cause or infection" instead of XMRV? The picture certainly seems otherwise valid and concise (kudos!).

It's not so much the chart that I was focusing my comments on, as it was the whole overall tone on this forum. The vast majority of members carry on as if it is a proven fact that XMRV is the cause of these conditions, which is simply not the case. Perhaps people's desperation to finally be vindicated, that they are really sick and it isn't all in their head, has caused them to ignore some cold hard facts, including numerous comments from research member Dan Peterson that XMRV may indeed just be a "passenger" to a broader condition.

If XMRV does prove out, hoo-boy! Life, liberty and the pursuit of happiness (and effective treatment) will follow!! :victory::victory::victory:

Not sure why the prospect of having a vrius excites you so much. How many viruses, in the entire history of medicine, have we found cures for?

 

[anne_likes_red]

I guess I haven't been paying enough attention lately to have a real handle on what the majority here constantly insists. Just as well by the sound of it. I don't be needing no extra frustration!
Rich Van K started a thread here back in November last year - the thread that made me finally join PR - titled "XMRV: Necessary but not sufficient?" That question mark around XMRV, if and how it fits in, has always been whats come through stongest on this forum for me.
I like a tree image Francelle
I've been unwell 26 years this month and in that time, I've tried to get down to those roots through many a branch. Keep bumping into a mean ol' trunk!
I'd love to know if there's something nasty I can deal with at the roots. My tree needs a tonic.

 

[Lynn]

Hi JPV,

I think I speak for many when I say that some hope is better than no hope. Before WPI and the XMRV finding, I was already sick. But as a person with ME/CFS I had no hope of treatment and also had to deal with the "it's all in your head" stigma. But now I have hope that there will at least be more research into this illness and maybe we can at least put a name to it that doesn't include the word fatigue.

Lynn

 

[JPV]

Hi JPV,

I think I speak for many when I say that some hope is better than no hope. Before WPI and the XMRV finding, I was already sick. But as a person with ME/CFS I had no hope of treatment and also had to deal with the "it's all in your head" stigma. But now I have hope that there will at least be more research into this illness and maybe we can at least put a name to it that doesn't include the word fatigue.

Lynn

Like I said, hanging on the belief that XMRV is the cause of these conditions seems to be far more about validation than reality. Not to mention that hoping that one has a virus, with the medical community's dismal track record with curing viruses, is a strange mindset, in my opinion.

Frankly, I'd rather not have a virus and prefer to just deal with the social stigmas associated with this condition than vice versa.

I'm of the opinion that researchers like Martin Pall, Kenny De Meirleir, Rich Van Konynenburg and even Freddd are far closer to uncracking this thing that WPI is.

 

[lancelot]

Frankly, I'd rather not have a virus and prefer to just deal with the social stigmas associated with this condition than vice versa.
.

We are all entitled to believe what we want, but that will not change the truth.

The truth is out there!

 

[floydguy]

Like I said, hanging on the belief that XMRV is the cause of these conditions seems to be far more about validation than reality. Not to mention that hoping that one has a virus, with the medical community's dismal track record with curing viruses, is a strange mindset, in my opinion.

Frankly, I'd rather not have a virus and prefer to just deal with the social stigmas associated with this condition than vice versa.

.

Even if you are dubious about XMRV you should go to bed praying that XMRV research provides some major clues. Otherwise our situation will be like the UKs is currently multiplied by 5. The only treatment you will get is GET. Personally I'd rather contend with a virus with the scientific community at least doing their best to come up with treatment as opposed to the psychos lining up to line their pockets with bogus treatments.

 

[JPV]

Personally I'd rather contend with a virus with the scientific community at least doing their best to come up with treatment as opposed to the psychos lining up to line their pockets with bogus treatments.

How many decades has HIV research gone on without substantive results?

 

[citybug]

I don't think it is ever premature to think.

If XMRV is over 90%, and some people think it is a passenger, what would it be a passenger of that's in 90% of ME/CFS patients spread all over the world? Isn't a known retrovirus the most likely cause of the immune dysfunction? Are they saying there must be another retrovirus, causing this retrovirus? Aren't clinical trials the fastest or only way to find out?

If XMRV is proven, people still have the option of treating it with any protocols they are using now.

 

[lancelot]

How many decades has HIV research gone on without substantive results?

Without substantive results? This is not the 80's. HIV is not only preventable but treatable today. People are no longer disabled and dying of HIV with the proper retro anti-virals. I don't understand your negativity.

 

[JPV]

Are they saying there must be another retrovirus, causing this retrovirus?

Who says the condition needs to be caused by a virus? Not all ilnesses are caused by a virus.

 

[JPV]

PI don't understand your negativity.

I think I already explained my feelings pretty well on the subject...