Myalgic encephalomyelitis (me), retroviruses, gambling & medical taxonomy.

[Anglia ME Action (UK)]

MYALGIC ENCEPHALOMYELITIS (ME), RETROVIRUSES, GAMBLING & MEDICAL TAXONOMY.

If I wasn't living in grinding poverty due to having ME and having been forced into years of self-defending campaigning, I would give lots of money to new retroviral research - it is so important - save perhaps for a few bucks reserved for indulgence on a speculative wager (if I could find a taker in the book-making fraternity). My bet would be this: that classic Myalgic Encephalomyelitis (ME) LONG pre-dates widespread patient affliction with the recently discovered retroviruses published in the journals Science/PNAS and that they are, like HIV, relatively new kids on the block (at the very least, in terms of widespread incidence in human beings) that undermine immune and other body systems and make it likely that an afflicted individual develops A WHOLE RANGE OF possible illnesses, NOT just ME.

A second part of my bet would be that the 1980s relative upsurge in the incidence of ME, neurodegenerative diseases generally and other illnesses would be largely (but not exclusively) explained by the arrival or spreading of these malevolent 'new kids on the block'. It is early days, but the sooner LARGE numbers of other, non-ME, patient groups (multiple sclerosis, lupus, etc, etc) are investigated for presence of various new retroviruses the better. I firmly believe we need to know how widespread retroviral infection is likely to be within broader patient/population groups and not just assess ME patients with healthy controls in isolation.

Moreover, it would be a travesty upon travesty if, in future, some new-fangled insurance-industry-driven patient sub-grouping test/initiative declared that genuine ME patients without proven retroviral infection are somatising mental-cases that are not worthy of medical attention or welfare support. Call me a cynic, but vested-interest is the mother of persistent perverse outcomes: to quote Professor Bruce Charlton, "In terms of the classical theory of science; bogus theories should be readily demolished by sceptical competitor(s)... However, in practice, it seems that even the most conclusive 'hatchet jobs' done on phoney theories will fail to kill, or even weaken, them when the phoney theories are backed-up with sufficient economic muscle in the form of funding."[1] A timely statement if ever there was one and whilst maybe, just maybe, the wider self-interest of society in removing pesky retroviruses from blood-transfusion banks will ultimately mean the 'all ME is somatisation, etc' assertions of the Wessely School[2] will be finally laid to rest, you can bet your bottom dollar that questionable psychiatry will broadly continue in many alternative forms.

If they are to maintain any semblance of scientific credibility however, the new retroviral findings and subsequent international moves to protect blood supplies simply MUST now have fundamental and radical revising effects upon ALL official health bodies with regard to ME: both those that have already been questionably guided/influenced by psychiatric/insurance-industry lobbying (such as those in the UK like NICE, the DWP, the MRC and Department of Health[3]) and those who are currently subject to such ongoing powerful lobbying (e.g the ICD Revision Team of the World Health Organisation examining ME/CFS medical taxonomy). The ME community clearly must use the new retroviral discoveries to the maximum medico-political effect and the Whittemore Peterson Institute deserve a medal and every penny we can pass their way in my view.

For what it's worth however, I personally think, particularly in these early days, we should be cautious when it comes to assertions over what we claim 'causes' ME - especially where such claims involve causal-exclusivity/primacy - and, for the time being at least, simply use recent retroviral findings to augment and draw attention to the large body of existing biomedical evidence that indicates ME is no somatisation disorder and that it needs proper recognition, funding and research on at least an equal footing to that given to HIV/AIDS.[4] As one of the authors of the recent PNAS MLV-related retrovirus paper[5] said way back in 2006: there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. Its not an illness that people can simply imagine that they have and its not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over.[6] Quite.

Useful overviews of such biomedical findings have been provided by Professor Malcolm Hooper, for example, and contain information which no medical practitioner treating, assessing or commenting upon ME patients should be without.[7] Questions of ME/CFS medical taxonomy and diagnostic criteria do indeed need to be readdressed, but not in the increasingly obvious unscientific way the insurance-industry-linked Wessely-School psychiatric lobby would like. A good start to such questions comes from that excellent psychologist/scientist, Leonard Jason, in his recent, must-read, peer-reviewed paper entitled 'The Development of a Revised Canadian Myalgic Encephalomyelitis / Chronic fatigue Syndrome Case Definition'.[8] It may take a long time, but one gamble I am certain will not pay off is by those who, for various reasons, thought they could effectively ignore what has been known by the enlightened for a long, long time: that ME is a serioius PHYSICAL disease. Dr Melvin Ramsay[9] WILL have his day.

Anglia ME Action.
contact@angliameaction.org.uk
[Permission to repost].


ENDNOTES:

[1] Professor Bruce Charlton Zombie Science a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest, Medical Hypotheses (2008) 71 327-329, DOI: 10.1016/j.mehy.2008.05.018: See:
http://medicalhypotheses.blogspot.com/2008/07/zombie-science-dead-but-wont-lie-down.html

[2] Note, for example, Professor Simon Wessely's assertion that "ME is simply a belief, the belief that one has an illness called ME" amongst others in his presentation to the 9th UK Elliot Slater Memorial lecture. See:
http://www.meactionuk.org.uk/wessely_speech_120594.htm
For further evidence of Wessely School misrepresentations of ME/CFS see 'QUOTABLE QUOTES' Compiled by Margaret Williams on behalf of the UK charity 'Invest in ME', April 2007, at:
http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf

[3] Note, for example the comments of the Parliamentary Group on the Scientific Research into ME (GSRME) with regard to the DWP: There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUM Provident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body. It may even be that assessment by a medical expert in a field of high controversy requires a different methodology of benefit assessment. See page 30 of The Report of the UK Group on the Scientific Research into ME (GSRME), entitled: Inquiry into the Status of CFS/ME and Research into Causes and Treatment. November 2006. At the GSRME House of Commons Website:
www.erythos.com/gibsonenquiry/index.html
And see various professionals' High Court witness statements at:
http://www.angliameaction.org.uk/nicejr/
And see:
Magical Medicine: How to make a Disease Disappear and Ethical and Scientific Concerns about the MRC PACE Trial, both by Professor Malcolm Hooper, at:
www.meactionuk.org.uk/magical-medicine.htm
www.meactionuk.org.uk/MREC-complaint.htm
And see:
CORPORATE COLLUSION. Professor Malcolm Hooper, Eileen Marshall & Margaret Williams. A MUST READ document.
www.meactionuk.org.uk/Corporate_Collusion_2.htm
And see:
Proof Positive? Evidence of the deliberate creation via social constructionism of psychosocial illness by cult indoctrination of State agencies, and the impact of this on social and welfare policy. Eileen Marshall, Margaret Williams 30th August 2005. At:
www.meactionuk.org.uk/PROOF_POSITIVE.htm
And see:
Concerns About Commercial Conflict of Interest Underlying the DWP Handbook Entry on ME/CFS. Hooper, Marshall & Williams.
www.meactionuk.org.uk/HOOPER_CONCERNS_ABOUT_A_COMMERCIAL_CONFLICT_OF_INTEREST.htm

[4] Such parity is well justified given the numbers afflicted with ME and its seriousness as indicated, for example, by Professor Nancy Klimas: "I hope you are not saying that CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV." Professor Nancy Klimas, University of Miami, reported in the New York Times, 15th October 2009.

[5] 'Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy blood donors'. Shyh-Ching Lo et al; PNAS, August 2010; Doi: 10.1073/pnas.1006901107. Available online at:
www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

[6] Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC (Centers for Disease Control and Prevention) press conference on 3 November 2006. See:
http://www.cdc.gov/media/transcripts/t061103.htm

[7] See Professor Hooper's peer-reviewed overview paper 'Myalgic Encephalomyelitis: a review with emphasis on key findings in biomedical research'. Professor M Hooper. J Clin Pathol 2007; 60:466471. Doi: 10.1136/jcp.2006.042408.
http://jcp.bmj.com/cgi/content/abstract/60/5/466
And for a more extensive overviw see 'ME/CFS (WHO ICD-10 G93.3) BIOMEDICAL EVIDENCE SUMMARIES', Extracts from 'Magical Medicine: How to Make a Disease Disappear...' at:
http://www.angliameaction.org.uk/docs/biomedical-evidence-summaries.pdf

[8] 'The Development of a Revised Canadian Myalgic Encephalomyelitis / Chronic fatigue Syndrome Case Definition'. Leonard Jason et al, American Journal of Biochemistry and Biotechnology 6 (2): 120-135, SN 1553-3468. Available at:
www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf
www.scipub.org/scipub/c4p.php?j_id=ajbb

[9] MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. By A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. Published 1986. See:
http://www.meactionuk.org.uk/ramsey.html


- ENDS -

 

[Mark]

Wow! What a great first post! One of the most thought-provoking pieces I've read in some time.

My bet would be this: that classic Myalgic Encephalomyelitis (ME) LONG pre-dates widespread patient affliction with the recently discovered retroviruses published in the journals Science/PNAS and that they are, like HIV, relatively new kids on the block (at the very least, in terms of widespread incidence in human beings) that undermine immune and other body systems and make it likely that an afflicted individual develops A WHOLE RANGE OF possible illnesses, NOT just ME.

This is an angle I'd not really focused on, strangely - even though I quite agree that it appears likely that the retroviruses provoke a wide range of other illnesses (based mainly on WPI comments about finding XMRV in autism, atypical MS, childhood alzheimer's - which is all unpublished of course - and also on the rise in such conditions in a similar time-frame since the 1980s). It would be a real kicker if 'classic' ME turned out to be just one of a number of conditions enabled by gammaretroviruses, because that would mean these results were a much smaller step forward than we hoped, and might be of no help at all to people with ME but no retroviral infection.

Against that line of reasoning, I suppose, we have the fact that both of the big positive studies so far have found such high percentages in the people they studied. So if classic ME is not necessarily induced by retroviruses, we would have to assume that the cohorts in both these studies were almost exclusively made up of people with 'new' (retrovirus-induced) ME for some reason. But that's very possible.

the sooner LARGE numbers of other, non-ME, patient groups (multiple sclerosis, lupus, etc, etc) are investigated for presence of various new retroviruses the better. I firmly believe we need to know how widespread retroviral infection is likely to be within broader patient/population groups and not just assess ME patients with healthy controls in isolation.

I cannot overstate how emphatically I agree with this point. I have been saying this since the Lombardi paper, repeatedly, and with growing irritation, indeed disgust at the stupidity of the scientific process here. I said from day one: the very first experiment to do on the back of this finding, is to send small numbers of samples from people with a wide variety of illnesses to the WPI to test with their methods, to get a very rough sketch of what the retroviral association is with a variety of illnesses - MS, autism, GWI etc etc. That approximate profiling of what illnesses the retroviruses relate to would give you so many clues as to what is really going on. And yet a year on, we still have no published data whatsoever on any of that, even though the cost of such a test would be trivial in the scheme of things and could be done in a couple of months. And there would be no need to get hung up on methodology either; just people send 10 samples of a group to the WPI and it costs a couple of thousand dollars for each illness you test.

I'm not talking about rigorous methodology or proof here, just a quick and dirty look to give us all a whole massive load of clues as to what to do next. If the MS samples all came back positive and the IBS ones were all negative, then the MS money can come in to XMRV research and things can start moving. I simply cannot understand why this has still not been done, and all the politics and scientific protocols are no excuse whatsoever - it's just pathetic and I refuse to respect the modern structure of medical science as a whole if it can't behave in a more efficient and rational manner. And I might add, without ever wishing to criticise them, that the WPI could have led on this, or called for this, as could anyone else, and since they have early results about that, I wonder why there's still nothing published in that area. It's politics and public relations and so on I suppose but it enrages me that science is so blinkered in its approach. Of course part of the problem is that if you did get those results about other illnesses, that would be used to undermine the significance of retroviruses in ME/CFS as such, and the 'passenger' possibility would be trotted out again. And probably the bigger problem is that requires people to pay the WPI for their tests, and they don't want to do that because they are an independent private institute and I'm sure lots of people just hate that and don't want to feed them. So it's tricky I'm sure, but it really should be done, to not do so for a year is just so irrational.

The rest of this post raises some excellent points as well - about the dangers for the future and the importance of taking this opportunity to bury the somatisation myth once and for all; about the risks for those who are left behind who for sure will face renewed allegations of somatisation (and maybe a backlash from some of the newly-validated too I fear); about the risks of pinning our campaigning to a simple theory which may turn out to be wrong. Indeed: the true significance of the WPI and Alter/Lo findings is a biomarker, for something at least, and the importance of retroviruses being prime/sole causes rather than passengers is really much less of a thing to hang your hat on than the importance of burying the somatisation theories.

Fantastic post IMO - thank you very much; more of that please.

 

[Anglia ME Action (UK)]

Thanks for your encouraging and insightful comments Mark.

Re:
"It would be a real kicker if 'classic' ME turned out to be just one of a number of conditions enabled by gammaretroviruses, because that would mean these results were a much smaller step forward than we hoped, and might be of no help at all to people with ME but no retroviral infection."
It would be an even bigger kicker if we allow our hopes to blinker us and make ourselves a hostage to future malevolent political fortune. My guess, or wager, is that possibly, or even probably, the majority of modern ME patients are infected with retroviruses and that if you treat them with suitable anti-retrovirals they have a much better chance of recovering/ increasing functionality. However, I am as certain as one can be - without knowing all the facts that only extensive research can reveal - that, for example, those tough little enteroviral beasties are from time to time quite capable of overpowering human immune systems sufficiently to cause ME and ME epidemics even without the help of retroviruses. Remember too that its not just retroviruses that are compromising modern human immune responses; there are various and increasing environmental toxins, radiological effects, as well as other bugs and poor diet, etc, etc, all synergistically acting against us. I'm as sure as I can be that the total picture on ME, and indeed the majority of modern physical illness, is more complex than linear thinking is comfortable with. This is what Professor Malcolm Hooper highlights using his spider's web analogy (you tug on one part and it pulls the whole thing out of shape) and his many seaside rocks analogy (being shown to be one bigger connected rock when the tidal seawater is no longer obscuring them).

You are dead right on
"I said from day one: the very first experiment to do on the back of this finding, is to send small numbers of samples from people with a wide variety of illnesses to the WPI to test with their methods, to get a very rough sketch of what the retroviral association is with a variety of illnesses - MS, autism, GWI etc etc. That approximate profiling of what illnesses the retroviruses relate to would give you so many clues as to what is really going on. And yet a year on, we still have no published data whatsoever on any of that, even though the cost of such a test would be trivial in the scheme of things and could be done in a couple of months. And there would be no need to get hung up on methodology either; just people send 10 samples of a group to the WPI and it costs a couple of thousand dollars for each illness you test."

So lets do it now! Set up a PHOENIX RISING RETROVIRAL RESEARCH FUND (PRRRFect) to pay for 10 friendly MS patients to go to the WPI phlebotomy lab. Great avalanching snowballs have small beginnings... If MS patients are retroviral-positive there will be a tidal-wave of interest and funding coming into the subject. How about aiming for 1,000 ME patients to fund the blood-draws of 10 MS patients to start? Count me in as number 1 of the thousand; only 999 more funders to find! How about you as number two Mark? Now all we need is a computer-literate volunteer to set up a web-page to recruit and administer the thing. A doddle really when there's so much at stake. Come on you ME geeks how about it?! :0)

Best wishes,
Anglia ME Action.

 

[Wonko]

reading between the lines I understood such quick and dirty studies had already been done - how else do you explain some of the coments reported as coming out of the WPI? as to why they havent been published - I would imagine it's because they were quick and dirty studies

 

[jayhawk]

Not having these studies done as part of a first step in the process is problematic and confusing. If these XMRV type viruses are present in other illnesses at higher percentages than the general population than we have to alter current theories. Speculation here is fine, but there is still just to little we know in the public arena to draw any decisive conclusions. Regardless, my hope is that treating the virus will help set the stage for recovery.

 

[Cort]

My bet would be this: that classic Myalgic Encephalomyelitis (ME) LONG pre-dates widespread patient affliction with the recently discovered retroviruses published in the journals Science/PNAS and that they are, like HIV, relatively new kids on the block (at the very least, in terms of widespread incidence in human beings) that undermine immune and other body systems and make it likely that an afflicted individual develops A WHOLE RANGE OF possible illnesses, NOT just ME.

I Even if XMRV et al are relatively recent introductions to humanity - a relatively recent introduction of a pathogen could mean anything from decades ago to hundred or even thousands of years. They are new kids on the block only so far as we recently discovered them.

We know CFS, MS, etc. have been around for quite awhile....for these retroviruses to be causing a wide range of other ailments suggest that THEY have been around for awhile as well. The idea that neurodegenerative diseases have exploded since the 1980's is an interesting one, it could be true...(and I hope it is!) but it could also be that these disorders are being diagnosed more often. The huge wave of ME/CFS that appeared to occur in the early to mid 1980's could simply have been the result of everyone who had the disorder but didn't have anything to call it - coming to the fore in one pack. Or it could be something that happened. For me, I think its been around in large numbers for a long time.

I agree that psychiatrists will continue with their efforts so long as a concrete cause is not pinned down...

If they are to maintain any semblance of scientific credibility however, the new retroviral findings and subsequent international moves to protect blood supplies simply MUST now have fundamental and radical revising effects upon ALL official health bodies with regard to ME:

I think it's too early to expect this. It will take multiple studies before the research community as a body says "yes, XMRV is associated with CFS" and that's what will be needed to force change. However, it may not take long.... by XMAS the Blood Working Group should be done and their results may very well be enough to have weight with everyone. One you have major influential groups agreeing that XMRV is in CFS then expect changes elsewhere. So far all the biggies are hedging... Once major opinion makers starting getting behind XMRV then pounce! I think the UK will have to get in line as will other countries.

There are still several other hurdles XMRV's must jump and one involves other diseases. THat XMRV is found in high percentages in CFS patients and low percentages of healthy people is fine. If it starts showing up in say, diabetes, or asthma or kidney patients or whatever then it's relevance to CFS will fade. My hope is that it is found in the series of controversial NEIDS such as CFS, FM, IBS, etc. or neurological diseases and that it stays out of other diseases. The big boys probably won't get on board before they see that as well.

We know that two HIV studies have been done, one on idiopathic flu like illnesses and one more. If XMRV is validated, and it seems like it will be - although it is always important to hear the fat lady sing.....then I'm sure researchers will start scouring chronic illnesses for XMRV. As I noted its already happening to some extent - I don't have any worry about that at all. Given the ability of retroviruses to cause chronic illness I imagine that most will start assessing patients for XMRV. Science, in general, however, works extremely slowly and its frustrating......

With XMRV they're moving much more quickly than usual. They've already infected and then dissected some of the most expensive research animals of the world. Dr. Singh is ploughing through corpses looking for XMRV in their tissues....at some point, I think, data is going to be pouring out of our ears.

: “…there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. ”

I just have to comment on this. I hate to say this but this is 4,000 published studies figure is complete BS. I see it all the time and I wish they would stop repeating it. It makes it sound like there's been alot of research into ME/CFS - that is NOT TRUE...PubMed says there are about 5,000 papers (not studies) on CFS -most of which don't even mention CFS and of those that do only a very small number of them focus on pathophysiology.

I took a look at what's happened recently. Excluding XMRV of the past 70 papers that Pub Med picks up for CFS only 5 deal with pathophysiology. The rest are on other subjects than CFS ( but somehow related), on psychology/behavior (about 9), epidemiology, clinical aspects...a good number are simply theory papers or comments. Many of the pathophysiology studies are pretty darn minor...decreased vit E levels in the blood.....a re-analysis of cytokine networks....the only important pathophysiological paper of the last 3 months is the Shungu brain mitochondiral study...There will probably be maybe 20 or more studies on CFS pathophysiology this year - many of which will be pretty minor....

If we had 4,000 studies on pathophysiology we wouldn't be screaming about research funding...we would be drowning in it. We would have 4 studies coming out a week....instead of one or two a month. There's actually very little study of pathophysiology in CFS - which makes sense given the disease is ranked at the very bottom of the 215 conditions at the NIH and they are the single biggest funder of CFS in the US.

If you want to look at documented abnormalites in CFS you can find them but they are often not backed up by many other studies - so the research world doesn't believe in them. Don't even try with pathogens ( except maybe HHV-6 -except there's little consensus on testing - ouch! ), cytokine results are all over the map - there's absolutely no consensus there, RNase L worked out but no one but CFS researchers was interested in it, natural killer cells, low HRV and mildly low cortisol all fit but they aren't blowing anybodies socks off. The brain imaging stuff is interesting but there's way too little of it....I'm sure there are others...low blood volume - yes.....some possibilities with heart problems...but again not alot of research - its very slow...There are several one shot studies that were never followed up on.. I still can't believe one study suggested that muscle activation from the brain was inhibited - it was positive! and never followed up on by anyone. I think CBT sucked the air out of that one.

In total there's alot of evidence for biological abnormalties in CFS but its generally spread out over alot of areas, each area of which, has usually not been well studied. The problem is lack of research funding to flesh out these areas! There are lots of intriguing areas in CFS that get a study or so every couple of years - that is not going to cut it! Funding is our number ONE problem. Our mantra should be 'Its Research Funding, Stupid".............That is why patients, particularly in the US, need to get more active.

The problem is that, in general, there is too little research in many areas to make anything really stick.

 

[Euan]

I agree with Mark. What a great first post. I like the idea of a fund to help people with other neuroimmune diseases get tested at the WPI. Afterall the WPI have proved they can actually do these tests competently. $10, count me in.

 

[Cort]

Moreover, it would be a travesty upon travesty if, in future, some new-fangled insurance-industry-driven patient sub-grouping test/initiative declared that genuine ME patients without proven retroviral infection are somatising mental-cases that are not worthy of medical attention or welfare support. Call me a cynic, but vested-interest is the mother of persistent perverse outcomes: to quote Professor Bruce Charlton, "In terms of the classical theory of science; bogus theories should be readily demolished by sceptical competitor(s)... However, in practice, it seems that even the most conclusive 'hatchet jobs' done on phoney theories will fail to kill, or even weaken, them when the phoney theories are backed-up with sufficient economic muscle in the form of funding."[1] A timely statement if ever there was one and whilst maybe, just maybe, the wider self-interest of society in removing pesky retroviruses from blood-transfusion banks will ultimately mean the 'all ME is somatisation, etc' assertions of the Wessely School[2] will be finally laid to rest, you can bet your bottom dollar that questionable psychiatry will broadly continue in many alternative forms.

I think you've put your finger on a key problem. The somatization theory will continue on for all non-XMRV patients and they may be weakened because they will be reduced in numbers. On the other hand, if XMRV wins out hopefully researchers will look at them with new eyes. If only about 50% of the people in the PR poll do not test positive -t looks like there are going to be some really sick people who do not positive for XMRV; the antibody tests are not going to fill that gap.

I agree completely with funding statement....Its ALL about funding - you can't get squat without funding! (Which is why I get so incensed by that 4,000 'studies' quote - that suggests that we have gotten alot of funding. We haven't. The 'documented' abnormalities relative to other disorders is weak; only a few areas have received much work...and while there are alot of positive studies there are alot of weak studies, as well, because few people have the money to do really good studies. This is one reason for the CAA's Research Initiative; it proposes standardizing research protocols so that everyone does well-designed comparable work instead of this little researcher or physician over here scratching out his own little (probably flawed) study that appears to have good results but which other researchers dismiss.

I think one problem is that while in total there is alot of evidence for problems its also hard to fit them all into a simple model. This is one reason XMRV is so exciting - its simpler! Its easy to study. That really helps.

Insurance company driven interpretation of CFS? I talked with a reporter from a prominent business media outlet; she was entirely focused on the idea that there is alot of money to be lost by changing the interpretation of CFS - she was all over it but she was having trouble getting any evidence that was so....With regard to Wesseley, for instance, when she double-checked she couldn't find any evidence that he was linked to insurance companies. If you have any good sources please pass them along and I'll pass them along to her.

The good news was that she was astounded at how poor CFS was treated and funded and that fact was really suspicious to her. She just wasn't able to find evidence of anything yet but she was really looking \.

 

[*GG*]

"I just have to comment on this. I hate to say this but this is 4,000 published studies figure is complete BS. I see it all the time and I wish they would stop repeating it. It makes it sound like there's been alot of research into ME/CFS - that is NOT TRUE...PubMed says there are about 5,000 papers (not studies) on CFS -most of which don't even mention CFS and of those that do only a very small number of them focus on pathophysiology. "

Cort, I thought Komaroff was a person that used this figure? I kind of get the idea between Studies and papers. So you can write a paper on something, but this does not mean that you have "broken" new ground? Like when they Meta-analyeses of papers/studies, not necessarily groundbreaking research?

 

[Sunshine]

I just have to comment on this. I hate to say this but this is 4,000 published studies figure is complete BS. I see it all the time and I wish they would stop repeating it. It makes it sound like there's been alot of research into ME/CFS - that is NOT TRUE...PubMed says there are about 5,000 papers (not studies) on CFS -most of which don't even mention CFS and of those that do only a very small number of them focus on pathophysiology.

Originally posted by ggingues: Cort, I thought Komaroff was a person that used this figure?

Hi ggingues, yes Komaroff was the person who said this. It's quite a well known quote. I think possibly from memory he said it on video too, not that it matters. For the record, here's the quote.

"There are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it's not a psychological illness. In my view, that debate, which was waged for 20 years, should now be over."

Source: Professor Anthony Komaroff, Harvard Medical School, speaking in Washington DC 3rd November, 2006. & Editorial in Am J Med 2000, 108(2):169-171.

That was 4 years ago now. Last time I heard a doctor/researcher say something similar, the figure was 5,000 which would seem about right. (250 studies per year world wide).

 

[Forbin]

Here is what Dr. Komaroff said to the Mass CFIDS Association on April 24th, 2010...

So, in the last 20 years, there have been over 5,000 scientific studies of CFS published, over 300 of them in the most prestigious medical journals in the world. There have been eight international research conferences, the last of which, last March 2009, had over 160 scientific presentations from people all over the worldscientists and doctors from all over the world.

Slide from the presentation


The quote is at 3:55...

[video=youtube;nLrL0y1ysV8]http://www.youtube.com/watch?v=nLrL0y1ysV8#t=3m55s[/video]

 

[biophile]

Cort has a point about not all of those several thousand papers being pathophysiological studies. However not all papers show up on PubMed. Alternatively, Komaroff may have been commenting on what the evidence is overall pointing towards (non-psychological underlying biological abnormalities).

 

[Marco]

"I just have to comment on this. I hate to say this but this is 4,000 published studies figure is complete BS. I see it all the time and I wish they would stop repeating it. It makes it sound like there's been alot of research into ME/CFS - that is NOT TRUE...PubMed says there are about 5,000 papers (not studies) on CFS -most of which don't even mention CFS and of those that do only a very small number of them focus on pathophysiology.

I took a look at what's happened recently. Excluding XMRV of the past 70 papers that Pub Med picks up for CFS only 5 deal with pathophysiology. The rest are on other subjects than CFS ( but somehow related), on psychology/behavior (about 9), epidemiology, clinical aspects...a good number are simply theory papers or comments. Many of the pathophysiology studies are pretty darn minor...decreased vit E levels in the blood.....a re-analysis of cytokine networks....the only important pathophysiological paper of the last 3 months is the Shungu brain mitochondiral study...There will probably be maybe 20 or more studies on CFS pathophysiology this year - many of which will be pretty minor....

If we had 4,000 studies on pathophysiology we wouldn't be screaming about research funding...we would be drowning in it. We would have 4 studies coming out a week....instead of one or two a month. There's actually very little study of pathophysiology in CFS - which makes sense given the disease is ranked at the very bottom of the 215 conditions at the NIH and they are the single biggest funder of CFS in the US."


That strikes me as a little strong, but its difficult to quantify.

For example, the attached links to a Scopus literature review conducted for the UK Medical Research Council covering 2004 to 2009. If anyone is that way inclined feel free to wade through the 300 plus pages and tot up the number of papers indicating biological pathology v psychological/psychiatric. Even this distinction is not clear and, for example, do papers that fail to find the predicted correlation with psychological factors (and there are many) indicate a biological origin?

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006509


What I will say is that I appreciate the difficulties with quoting "4000 papers" whilst bemoaning the lack of research.

The problem, I believe, is not a numerical one, but until recently, with quality, which again all comes down to funding.

Too many of the biological pathology studies have been small scale, one man bands, not randomised, not repeated, not high profile etc.

The missing element to date has been the glaring absence of Government funding and a will to get to the root of the illness.

 

[leela]

Exquisite post, Anglia. Thanks for articulating so well.