I'm starting to feel like a broken record -- a third study European study has failed to uncover a link between XMRV and chronic fatigue syndrome. Is this the nail in the coffin of this theory? Was all the hype and excitement for nothing? Are we back to square one?
Not in the least. This Dutch study, like the 2 British ones before it, didn't even attempt to replicate the original XMRV study from the Whittemore Peterson Institute (WPI). It was the first to use similar testing methods, but the inclusion criteria were rather different -- which could mean that we're looking at 2 radically different populations.
For those of you who really know your chronic fatigue syndrome history, I'm about to use a phrase that will likely make your blood pressure spike -- Oxford criteria. Yep, the Dutch study used old patient blood samples, collected from people diagnosed under the Oxford criteria.
OK, for the rest of you, some history (and for this information I have to thank Mary Schweitzer, who's an amazing resource for these things!):
- In the early days of chronic fatigue syndrome, we had the Holmes definition. It was an attempt to put forth a common definition of and diagnostic criteria for this condition. It would later be replaced with Fukuda, which provided the definition and criteria still in prevailing use today.
- Between Holmes & Fukuda, there was Oxford. Unlike the others, Oxford only allowed for psychologically based symptoms, including depression, rather than physiological symptoms. Oxford's legacy is the highly controversial "biopsychosocial" approach to chronic fatigue syndrome.
The original XMRV study, which showed a nearly 68% infection rate, was done on samples from people who fit both the Fukuda criteria AND the more rigorous Canadian criteria. I don't care whether these groups of people are given the same label -- they're not the same! This is more muddying of the water by scientists with completely different goals.
It's incredibly frustrating to watch this work go on. First, we had potentially groundbreaking but preliminary findings from the WPI, which prompted calls for more research to confirm the link and determine its significance. Now, while the eyes of the scientific world are on chronic fatigue syndrome, we have 2 "follow-up" studies that used methods that aren't even proven to detect XMRV and a 3rd that's essentially studying a different condition. In these eyes of all those doctors who don't know much about this topic and will only glance over the titles and "conclusion" sections of the abstracts, this is a major blow.
It's easy to latch onto a new finding like XMRV and cling to it desperately as "the" answer, but I'm not doing that. Those of us who truly want to know what's behind chronic fatigue syndrome need quality research and comparable studies, looking at the same types of patients with the same methods. Whether the WPI's research was flawed or dead on, let's prove it so we can move on, either to potential treatments or other theories. Let's quit wasting time (and money, and people's lives) with politically motivated "science" that creates confusion and prolongs the suffering of millions who needed help a few decades ago.
I know I'm not the only one who needs to vent about this -- leave your comments below!
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Well done! I am amazed that they call these replication attempts “science”.
Thank you Adrienne. This has many CFS/FM patients furious, especially when people are taking studies seriously that came out within 51 days of the Science article.
I thought you might enjoy the transcripts from the Mikovits lecture for ProHealth if you have not had a chance to see the video. http://www.prohealth.com/library/print.cfm?libid=15172
Thank you for your blog post.
Thanks Adreinne for a rational insightful article! Yes me/cfs patients are angry about “tabloid” science reports attempting to pass as real science research with no intention of replicating WPI’s techniques to find this retrovirus. Whatever it’s role with me/cfs, we know the retrovirus is there. Dr. DeFreitas knows, Dr. Mikovits knows, Dr. Lombardi, Dr. Peterson knows, Dr. Bell knows, Dr. Cheney knows and many more. Whatever the politics or ego behind such shoddy research only causes more obstacles in the path toward treatment for millions of people suffering from this horrible disease. And anyone who will not join with integrity with those who truly want the answers should just step out of the way.
I’m glad to see studies going on. My wife has been suffering for the last three years, and the doctors just keep seem to be guessing and trying something different each time. she recently started a gluten-free diet, and show shown a lot of improvement, at least in her fatigue. It make me wonder why they don’t do more dietary studies. She’s started a blog to document her progress, if anybody is interested Gluten & Fibro Free Thanks for the posting
The levels of propaganda originating from the multinational health insurers is reaching epic proportions. You wouldn’t think this would affect studies in the UK. However if CFS and other diseases are shown to be real conditions then the millions of sudfferers in the US and world wide will be able to make sucessful claims also.
pt 1 http://www.youtube.com/watch?v=lCBCcSNvtdc
pt 2 http://www.youtube.com/watch?v=pIvTP3V05rg
Take a look at this video (2 pts) which is a speech by Robert Kennedy Jnr about the autism study cover up. Apparantly the original data showed undisputable links of vacines and Tiomersal to autism.
The data was conviently lost and subsequent studies were what he called “tobacco science” or “low grade fraud”. The mainstream press quoted these very deliberatly flawed fraudulent studies as gospel.
Just how difficult is it for these other testers to replicate the original XMRV study from the Whittemore Peterson Institute?
I don’t too much like conspiracy theory, but this thing is getting silly. Just do the same test!!! But I guess just like the above comment from “Sara” said, confirmation of this virus to CFS (and other things) would be a big problem (£$..) for Governments and all the rest – Not to mention big issues for the Red-Cross and other blood collection/testing institutions. How would the news be broken to the public?
I am just flabbergasted that scientists are not figuring out for themselves that they need to replicate the study in a scientific manner (same criteria, same tests, etc.). I have a hard time accepting that it would be that hard to carry out these studies in a careful and professional manner. But, I have always been a perfectionist.
Maybe those scientists just don’t have the time to bother with accuracy or the scientific method?!
I truly hope that someone steps up to the plate and does a well-executed study, like the WPI study, before the spotlight disappears from CFS for who knows how long. I need an answer, and so do so many others.
My personal opinion is that the XMRV theory isn’t looking very good at this point in time but what I can say is there is another theory being scientifically researched at the Bond University in Australia as we speak and I must say from what I’ve read about it, it certainly gets me very excited and makes a whole lot of sense but like the xmrv theory there’s still a way to go in proving this theory or not. The theory they have (Donald Staines & Bond University researchers) is related to Vasoactive Neuropeptide and or their receptors being compromised, it’s certainly worth the investigation and Donald Staines has written a book on all of this titled “Chronic Fatigue Syndromes and vasoactive neuropeptide autoimmunity” a must read if your mind is open to other theories other than the xmrv theory of which after I’ve read this seems way more plausible than the xmrv one.
To SARAH… Just what are you talking about/ spreading regarding “multinational insurance companies”… What? There is no such thing is multinational health insurance. If you want to BLAME SOMEONE, blame the ‘Mulitnational pharmaceutical industry’.. It Big pharma that wants people to stay stuck in the sick rut. Forget the dietary studies, or suppliment or antiviral drugs or anything else. They just want you taking a pill for this, a pill for that and so on and so forth until you wind up taking thirty pills a day.
I’m getting sick and tired of people with CFS spreading this ridiculous rumour about it being the insurance companies who don’t want to find a cure. You people who are spreading this lame story and doing each other a disservice. You have need well thought out what you are saying. Most all countries have single payer government subsidised health care, and most people which a bad condition of CFS have medicare and medicaid. SO WHAT ARE YOU TALKING ABOUT?
On the other hand, everyone… EVERYONE with CFS ( save for a few ) are hooked on tons of pills. Pills for everything under the sun are given to CFS sufferers and many are addictive! Now that’s a cash cow don’t you think?
What we need is people to stop taking those pills are refuse bogus cures. Yes, pills are bogus cures.
I’m from Upstate NY and I’ve had this since the mid 80’s and I can tell you PILLS ARE NOT THE WAY TO GO. Find something natural, and do some reading to find that. Get off the pharmaceuticals because that is what will eventually kill you.
To LYNN: Google “Unum insurance” and read the hits showing the lawsuits and the fraud. This company is in the US and in UK and has been paying Simon Wessely, the psychiatrist trying to make CFS into a mental illness, for decades. This company takes premiums for providing disability insurance to companies and private persons and has a very bad track record, as you will see if you do your homework. Not wanting to pay disability insurance claims is entirely possible as a reason that the Wessely group doesn’t want XMRV to be found. He was a part of the first UK “study” and his clones did the Dutch “study”. Also read Prof. Malcolm Hooper’s work: “Magical Medicine: how to disappear a disease”. Click on “Mary Schweitzer” above, get an education about the politics that have prevented bona fide research.
As long as you are going down the wrong path with no end in site you are going to be banging into a brick wall.
Of course they want it be a ‘psych’ disease because the only so called “cure” for the is PILLS..! And it’s not a cure, it’s a money maker. You think the whole world is held up by Simon Wessley? What is happening is big pharma is becoming entrenched in the UK government just like they are in the US government and with that comes ‘approval of treatments’ that the government sanctions. In this case, they are approving useless addictive pills for money making. Big pharma is entrenched in W.H.O. too and they call all the shots there. Right now you are giving them what they want… MONEY.. money that the insurance companies and tax payers are footing for the purchasing of pills of all kinds for people who have CFS. So long as all around the world people are taking ‘maintainance pills’ everybody is happy.
I live on the Canadian border and here you have a country that has not yet had big pharma sitting down at the table making laws in it’s country. I say NOT YET, because they are trying (big pharma). And what do you see in this country? A non- psych discription of this disease with some fairly safe and sound advice compared to most countries. Even their diagnostic criterion is much more on par with what this really is. On top of that Canada has not thrown Dr Bell under the bus. You won’t find people in the orginal outbreak areas ( which is me in upstate NY) taking all these pills and falling for this nonsense. These doctors who teach at medical school are getting paid for promoting the use of ‘useless pills’ for CFS. Recently several medical school heads resigned after being caught taking bribes. It goes on every day like this for big pharma. http://www.naturalnews.com/016676_bribery_CIA_bribes.html
And here is the Canadian low down. See how different when big pharma doesn’t have it’s hand completely over the government?
http://fm-cfs.ca/pharmacists-CFS.pdf
I get TV, radio and news from two countries on a daily basis because I’m right on the border of Canada and the US, and there is a huge difference in the way things are treated. The first line approach is not always useless pills in Canada.
This CFS outbreak here in NY started in clusters and effected a lot of people. It started suddenly, and it was identical in almost all people in the area ( Bells patients), and now we have muddied diagnostic criteria in the US and the Uk, the two counties that have big pharma in their pocket. Big pharma is running the FDA in the US, and they are just below the surface in the UK but there none the less.
People all over the world (stock holders) are making lots of money from CFS people taking tons of pills. It’s a cash cow… and I’m sure nobody hopes it will end soon.
I don’t care if some mega company makes zillions from the cure for CFS. Time will tell as far as XMRV being the cause. If it is, I hope the researchers at the WPI all get rich along with the first “big pharma” that comes up with the treatment. The psychiatric meds while not the cure have sure been helpful. I have other health issues for which the medications have been very effective and I’m thankful for them. The biggest waste of my money went to the various alternative practitioners, chiropractors, acupuncture and snake oil salesmen in the first few years I was sick. Keep up the good work Adrienne, I look forward to your next article.
Lynn,
I absolutely understand how you feel about big pharma & I have no love for them myself; however, they may or may not actually be the reason for the ridiculous psych theory of CFS. There are other possible reasons/agendas behind it (and there is good evidence supporting those reasons, just as there is evidence of the pharmaceutical companies involvement).
While the passion & conviction your writing displays is admirable, the way that you say some of it comes across as an attack on your fellow patients. That is far from admirable. We are all sick and looking desperately for answers, and when you throw out statements that start with “You people” it only serves to alienate those who should be allies in this fight.
Further, I know of MANY CFS patients who are not only NOT taking meds for their condition, but who are vehemently against doing so. Many of us are extremely sensitive to the effects of drugs and cannot take them. Many of us are taking quite a few supplements, rather than meds. And, yes there are a group of patients who do take meds and have found that they help them. (While I do not like meds myself, I am thrilled for them if they are truly finding some relief that way.)
As to the UK, the only treatments they push are GET and CBT. If you look into the treatment guidelines there, it is all about convincing the patient that it is all in her/his head, that she/he has “abnormal illness beliefs” and is unconditioned and needs to be pushed into exercise. They routinely refuse to allow any other forms of treatment or even other tests to rule out other illnesses. And, they take away assistive devices (like wheelchairs) becasue they try to say that such devices allow the patient to continue to play the sick role. While I do not doubt that psych meds play a role in the treatment in the UK, nowhere have I seen them stressed as primary treatment like they are in the US.
Also, Wessely and White ARE considered the main authorities in the UK on CFS, and they have a HUGE (and documented) influence on treatment guidelines. They also have consulted many times with the US, and a couple of psychiatrists from their school of thought are currently consulting with the APA on the new version of the DSM (which is attempting to change the somatic disorders category so that it will be extremely easy to include CFS as a psych disorder).
It is perilous to ignore the impact that they have had and continue to have on both the UK and the US. And, yes, there are documented ties between Unum and Wessely, as well as many other conflicts of interest. (I am NOT saying that I necessarily believe that insurance companies are the reason behind the psych agenda, but I am saying that to discount that possibility is not wise.)
Well said, Tammie.
Lynn, it’s really not as cut and dried as that here in Canada. Pharma companies take our doctors out golfing and start marketing their products to med students the first year in medical school. The twenty years I spent not getting any treatment or acknowledgement of my CFS is proof of that. The Canadian system is far from perfect (I work for a health care watchdog and while we may have a better system than the States, we’re still near the bottom of the list quality wise). We could argue about who has it worse, but what’s the point when we’re all the same boat, trying to stay afloat? I do like the idea of looking at health systems around the world to see if anyone IS doing right by CFS/fibro patients.
You’re also right about the profit motive being a big barrier to getting quality health care (whether it’s Big Pharma or a big insurance company).
Awesome critique Adrienne.
I’m actually a health librarian, and my field has this notion that ‘consumers’ should only be given watered down, easy to understand pamphlets because they assume that only someone with a science degree can critique a scientific study.
It would be obvious to anyone that these past studies are politically motivated and complete crocks of BS.
We may have good criteria for ME/CFS for diagnosis here in Canada, but the number of Dr.’s who know anything is minimal, and the number willing to treat you even rarer.
It seems silly to me that it’s been made really clear WPI is using a testing system that they’ve developed to be very sensitive in order to accurately detect the presence of XMRV. It’s been made really clear they are testing a population that fits stringent criteria for ME/CFS. It seems bizarre to me that anyone can think the follow up studies refute ANYTHING, when they are using less sensitive testing techniques, and loosely defined/diagnosed CFS patients/test subjects.
You’d think the big smart scientists could grasp the simple concept of REPLICATING a study. Same subject critera, same testing methods… duh.
Until that is done, we will know nothing more.
If only people could put their own agendas and egos aside and put their money and brains to better use, actually focusing on figuring this thing out. We may have a chance at learning the cause, and at finding a cure.
Personally I’m surprised big pharmaceutical companies aren’t all over researching this. You’d think with the profits they’ve made from HIV/AIDS treatment they’d be happy to have some treatments to market us. Even if they’re not particularly aware or concerned for us, you’d think the almighty dollar may have swayed them *rolls eyes*
HELLO, I’ve experienced CFS and FIBROMYALGIA FOR AT LEAST 5YRS NOW.WELL DIAGNOSED ANYWAY. I’M AN OFFICIAL GINEA PIG LIKE MANY. I’M JUST READY FOR SOMEONE TO SIGN ME UP. IT’S DIE A SLOW DEATH FROM OTHER COMPLICATIONS OF THIS ILLNESS OR MAYBE DIE QUICKER TRYING TO SAVE SOMEONE ELSES LIFE.LIKE EVEN MY CHILDREN OR GRANDCHILDREN. TIRED… TIRED TIRED….I WAS A MILITARY WIFE WORKED IN LAW ENFORCEMENT MY SON SERVED HIS TIME IN THE AIRFORCE. FIVE GENERATIONS OF PROUD MILITARY SERVICE FOR THIS GREAT COUNTRY…AND NOW JUST SOME OF THOSE THAT WILL DIE AND HAVE DIED FOR THE GREATER GOOD?!!!
Thanks for the article. You’ve summed up everything very nicely. Now here’s hoping for a real replication study. If a true replication fails to find a link, I’ll be very sad, but at least we’ll be making some scientific progress.
Too many people here have made comments that are akin to “shoot the messenger’ rather than the message. Some here say I’m attacking patients, which could not be further from the truth. I wish someone would have tossed me a dose of reality about twenty years ago when I was dumb and went to a ‘doctor’ who doled out pills like they were going out of style. It took me five years of withdrawal symptoms to get off of pain pills, sleeping pills and all that crap. I suffered through it all with it in mind that if I died during it, it would be better than living on pills. In the end, I’m very pleased at my life without big pharma in it. I would hope that someone who is going down this very horrible road with big pharma and isn’t sure if it’s the right road will read what I write and get off this path as fast as you can.
Others here want big pharma to make a lot of money… and they wonder why big pharma has not tried to come up with a cure. Well to them I say that the answer is already in front of you and it’s because big pharma is already making out really big on this disease, just not from me is all.
Then we come to the UK people who are convinced that the treatment on their Island is setting world standards… It’s not. There is NO decent treatment for CFS any place in the world. I’ve been studying this for twenty-two years and many of this was University based, and I can tell you that all over the world big pharma is sinking their teeth in and working to make this a psych disease and that goes for Taiwan, Malaysia, India, and any other place they can get their foot in. They are doing it to sell drugs and W.H.O is complacent with them just like with the H1n1 fiasco where they convinced the UK government to vaccinate all those people for a make believe pandemic. It’s all about the share holders. The companies can sell more stock when you buy more pills. You can see the ‘tracks’ big pharma leaves behind. First it starts with the ‘golf vacations’, but later it moves on to where they have a seat at the table and are making laws in your country. This is where the US has been in the 90’s, and the UK is ten years into the take over by big pharma and Canada is just getting rolling. I warn people because it’s not in their best interest to become addicted to big pharma’s pills. It’s better not to be conned into taking these harmful drugs than to be conned, and then have to go through five years of withdrawal symptoms that make CFS seem bearable.
To keep jumping on me like I’m trying to harm someone may make many of yous feel good in the short run, but in the long run, you are the one who has to live with yourself and the reality of our situation. It yous want to get mad at someone, get mad at the doctors who give you the pills and give you no way off of them except serious suffering. Clearly there has to be a better way than this.
As far as Canada goes, I see that your country is being taken over by big business and along with that is big pharma. There is no larger lobbying force in the world besides big pharma, and big oil. All the rest are tiny in comparison. The health insurance industry is a small toy compared to big pharma, that’s why I’m so surprised that people are still holding onto the the ‘insurance’ theory. Just follow the money… who benefits from this disease?
Arguing about whether big insurance or big pharma is the problem is like arguing about which is dirtier, mud or slime. Big pharma wants you taking pills to treat your problem (and more pills to treat the side effects of the first pill) and big insurance wants to avoid paying claims at all costs. See, here in the Insured States of America, Big Biz has had decades to perfect their perversion of the constitutional system our founding fathers set forth. Statesmen have become politicians who spend 90% of their time & effort campaigning for the nest election and prostituting themselves out to the lobbyists for corporations from which they get funding.
I am – was – a big tough guy who worked 40 hours a week, played music on weekends, belonged to a boating club, worked in my shop, and never had any type of mental problem. Then Fibromyalgia came along and took everything I had, put me on my back for 3 years and still controls my life. I take tramadol, which is the ONLY thing that has had any effect at all. And I tried everything – chiro, alt meds, deep tissue massage, warm water exercise, you name it.
Whether this abomination is caused by xmrv, vasoactive neuropeptides or gamma rays from space, it is NOT a mental problem, and I caution the next doctor or anyone who propounds that theory to have good dental insurance and be standing back aways before they say it to me.
Just like the Wall Street mess, we-the-people are going to have to stand up and scream if we expect to accomplish anything; it may even require a new American Revolution. There’s not ONE WORD in our constitution that mandates superior access to legislation for corporations by virtue of bribing our elected officials. It’s time we returned to government of, by and for THE PEOPLE.
Maybe then we can get some research driven by scientific inquiry and not pre-ordained results requirements to protect someone’s profits.
Even though the XMRV studies are hazy at best, I have always had the idea that my CFS is caused by a chronic virus of some sort. I suspect a herpes virus.
I was in the WP study (and on the Dr. Oz show) and the criteria were totally different. The Mayo Clinic found that I have autonomic neuropathy and I also have tumors in my liver and spleen, hardly psychological symptoms. The European studies are irrelevant (the Dutch one had 25 people!) and the press just wants to stir things up. Too bad real facts aren’t news like this crap is.
Pills that work, are cheap, and have no or minimal side effects: neurontin (gabapentin) for nerve pain, robaxin (muscle relaxer) for muscle spasms, glycopyrrolate (controls sweating and helps sleep), propranolol (slows heart rate), benicar (lowers blood pressure), and prevacid (fixes gi probs). I take all these plus Lifepak nano and fish oil and feel great. Don’t knock the pharmaceuticals, they have made my life worth living until an antiviral for xmrv is discovered.
From Adrienne: It’s wonderful that the meds work well for you and that you don’t have side effects! It’s worth noting, though, that some people do have side effects from those drugs, including severe ones. ~Adrienne
I believe that they want to link the FM and the xmrv so they can produce the medication and make us take it. So great for the pharmacy industries, just like AIDS. A total crap