Discussion in 'XMRV Research and Replication Studies' started by Katie, Nov 10, 2009.
LOLLOLLOLLOLOLOLO - oh my, Anne. Too funny - thanks for cheering me up
And what about cats? One theory is that it jumped to us via cats, or that we got infected via cats through flea bites or something (partly based on a suspicion pre-dating the discovery of XMRV and a study that found 98% of CFS patients had once lived with a cat, somewhat higher than the norm).
How could you tell if your cat had Chronic Fatigue Syndrome?! My family found that concept most amusing!
It's interesting that the blurb that accompanies the video points out that Dr. Silverman is the one who discovered the virus (which is true), and it gives a very positive, Cleveland-oriented emphasis to the story. It's nice to have a big city like Cleveland on our side, along with the people in the video shown wearing lab coats, holding pipettes.
Walter Tarello in Italy was working with CFS in animals
He used to post to some of the CFS groups a long time ago and I know of patients who went to see him in Italy
I've totally lost track of him now
Not to over stress the point but I think we need to be very careful not to assume that the scientists are automatically going to come to the rescue.
There's a natural tenedency to think that science is always rigorous, fair and objective but in reality science is all too often distorted by political agendas, the agendas of funders, interdisciplinary and peer rivalry etc.
Takes the example of man-made global warming. Regardless of your views on it, it is undeniable that there is not the scientific consensus often portrayed by various governments and the media. Governments, having decided they 'believe' in it, skew funding towards the subject. This attracts research proposals with a man-made global warming slant and successful research attracts further funding. So there results a natural bias towards funding of research which supports the hypothesis of man-made global warming, there is a tendency not to fund research which rejects this hypothesis and any such research that is published tends to be sidelined by the prevailing 'zeitgeist'.
Or - look at the difficulty in finding reliable meta-analyses of the effectiveness of CBT and graded exercise and how difficult it is to feed this back to government decision makers.
Leaving this aside - at least we are now talking about prominent researchers in the retrovirus field a subject the psychiatric lobby have no expertise in and can't interfere in. BUT; by the same token few virologists have the knowledge of the whole sorry history of ME/CFS or have clinical experience of ME patients. What diagnostic criteria/symptom set will they use to select subjects, where will they find the subjects? Will they be required to work with established 'experts' in the field? If, in the UK context for instance, if they select subjects using the more strict Canadian Concensus document guidelines, will the results be accepted by a medical profession and government which adheres to a broad CFS definition and treats accordingly.
In short I'm very concerned that the psychiatric lobby and other vested interests still have the capacity to severely muddy the waters leading to, at best, results which are inconclusive and missing the opportunity of a generation.
I do not believe in the ability of, or trust, the scientific community, governments or the medical community, to ensure that any XMRV research into ME is rigorous, fair and objective. Nor do I trust the various ME charities. Not that they do no good, or do not have the ME community's interests at heart, but they to often need to operate 'inside the tent' to retain any influence.
Unfortunately I feel that we, the ME community, need to 'police' this research ourselves by compiling a worldwide register of all such research detailing the researchers, funders, associates/advisers, terms of reference/research aims, diagnostic critera for subject selection (narrow definition limited to 'organic' ME v wide CFS definition), research outcomes etc plus a commentary on our assessment of the robustness and objectivity of the research. We could even make predictions of the likely research outcomes based on the above factors. We could even organise to provide a brief for anyone intending to carry out such research.
OR am I being too paranoid?
Hi Marco, I think you make good points here. There are, of course, lots of vested interests in the ME/CFS world.
I've been in touch with the mother of the (XMRV+) twins with "childhood alzheimer's" mentioned by Peterson at the CFSAC meeting, and she's eager to rally together to push for XMRV research. (There's a thread on this if you're interested.) It's made me think that we're best off focusing for now on XMRV rather than ME/CFS or ANY of the individual conditions associated with XMRV. If all the XMRV-associated conditions were united, we'd have a much stronger lobby - some of those conditions, like autism, already have very active and effective lobbying efforts in place, and some, like Neimann Pick C, are so compelling that they've been picked up by all sorts of news organizations. I think we're already seeing some of the benefit of riding the coat-tails of other conditions, as it were.
After all, it's much easier to simply shift the focus (for the time being) than to get anyone with a vested interest to admit that they were wrong and ask them to change. Once XMRV is well-understood (assuming the research pans out) we can get back to emphasizing its link to ME/CFS.
a voice of reason
I hope you continue to post. I think you have a very important outlook and you put into words what I haven't been able to adequately formulate in my own mind.
I think you are being realistic based on how "science" seems to bumble along.
I think "science" is also influenced by interest, and the particular zeitgeist of the time.
In one of my college classes, I needed to come up with a research proposal in order to learn the skills involved in a phenomenological study. I chose to write a proposal titled "The Experience of Attending a Graduate Program While Living With Fibromyalgia." While digging through the databases on FM and CFS, I was amazed to find a lot of studies based on the personality of the patient, with one author noting that historically, in syndromes for which the organic basis is unclear, personality characteristics are often used to explain the causes. I would come across studies on the "fibromyalgia personality," the "pain-prone personality," etc. I know I have also read about a "cancer personality" and we have all heard about Type As who get blamed for a myriad of disease states.
Fortunately, personality structure studies are no longer a hot topic for research as far as I can tell, but it did capture the imagination for quite a few years. If poor questions are asked to begin a study, it doesn't matter what else is done right, you will end up with useless, even dangerous data.
So Marco, I don't think you are being too paranoid. I think you are offering a voice of reason and objectivity. I nominate you chief of police of all XMRV research!
I second that nomination, Gracenote. But Marco, you and others can call on all of us to communicate to the public, institutions, scientists, etc. so that the "new" research doesn't just confirm the old beliefs.
Because I was a good history student in high school, I was put into an advanced seminar in college on the Historiography of Science, which was the history of the philosophy of history as it pertained to science. What I soon learned, to my shock, was that history wasn't about "the truth" or the record of facts, but was much more about the beliefs, cultural perspectives and world view current in any particular time or place. Then those would select or create the "facts" with which the story of history would be devised.
So maybe there is good news here as well as the bad news. The good news is that each of us has influence in shaping public views of our kind of illnesses, by communicating honestly whenever we can manage it. This changes the context in which "the facts" are heard and interpreted.
My 2 cents!
Just because you're paranoid...
...it doesn't mean they aren't out to get you...
Marco, another superb post, you are writing here about the most important and urgent issue that we must get organised around - in just the way you describe - if we are to avoid the risk that history repeats itself and the door is slammed in our faces once again.
Absolutely. For years now, fuelled by disillusioned ex-researchers who quit when their last few crumbs of control over their own research agenda were lost to financial and political control, I have been fond of saying "Science no longer exists. It's all politics now". Weirdly, I never connected this realisation with our illness until now.
I do not believe it was always like this, but 'Science' now is a financially and politically directed political battlefield, and the guy with the most money nearly always wins. Yet somehow, real science still pops up occasionally, as it has done now in dramatic fashion at the WPI, and it is our task now to fight to ensure that this green shoot is not trampled underfoot as it was in 1991 when 2? 3? independent studies were "unable to reproduce the findings"...
That is our warning from history, and we must now be in that game, we have to fight for our corner, because there are so few who will do it for us and so many ranged against us with so much to lose. It is a cruel and vicious requirement, as people with so little energy to spare, sometimes struggling to even survive, that we have to take on this work - but this is our little window of opportunity, right now, and those of us who have the capability to play our part are now standing up.
Crucial point. These retrovirologists give every appearance of knowing nothing whatsoever about us, and why should they when we have been invisible to the world? If you search this forum for the link to the Swedish prospective study, you will see something that fills me with hope: a retrovirologist musing on his past few weeks experience learning about ME/CFS, coming fresh to the field, and showing every sign of understanding what it's all about. These are the people we must write to. We must directly contact every scientist involved in every one of these studies and explain our fears and concerns about this research, explain that we cannot afford for them to fail, explain the politics of defining us out of existence with Oxford Criteria and every other dirty trick in their book. We must help them to help us. And we must hope that the other side don't believe we have it in us to do all that.
Marco is right: this is the opportunity of a generation.
That's as good a blueprint as I've seen for what we must do right now. And there is not much time. (That's the only thing I can think of missing from Marco's database spec: the timetable for these studies. I agree, we should publicly predict the results of these studies ahead of their publication, and explain our reasoning).
Gracenote makes the next key point: we need to join up with campaign groups for autism, multiple sclerosis, IBS, MCS, FM, Lyme, Gulf War Illness, and any other ideopathic neuro-immune condition, and impress on them the evidence suggesting that XMRV could be as significant for them as it is for us. 4% of the population are X+ so we may be a minority, but we're not tiny. All those labels may disappear into XAND anyway, and it's worth remembering that "divide and rule" is the oldest trick in the book. Unity is powerful, so I'm told, and besides, we cannot afford to leave anyone behind - and they will try to pick some of us off and keep at least a rump of unfortunates to preserve their careers.
At the same time, the CFS studies are already in progress, so the most urgent and pressing task is to make sure those studies are studying XAND patients. I don't trust the argument that we need a global unified criterion for this study; we need to tell them that their true task is to range across a complex and distorted set of groupings and find the XAND.
So Marco, if you are paranoid, then so are we all, and our fears are exactly the same. If we are all paranoid, then we have nothing to lose but one more Christmas holiday. If we are not paranoid, we stand to lose everything. I for one am not prepared to take that risk.
1: Define the group(s) on this forum who will take part in this work and rally the troops.
2. Ask Cort for some sticky threads.
3: Implement Marco's Plan.
(Note Katie's thread proposing a UK and European campaign group, currently with slightly longer-term objectives
Do I have a second?
need new thread
I second your proposal, Mark, though I can't do much more at this time. I will suggest, however, that Marco's post and yours become a new thread rather than a part of "Top scientists to meet at Cleveland Clinic on trial of XMRV." Right now I have no ability to follow up on this suggestion, but somebody? I think both your posts need to be seen on their own.
I agree completely Marco & Mark, and can pitch in. THANK YOU for so clearly articulating what needs to be done. Please do start a new thread for this.
Go right ahead.
I am reading Osler's Web. I was diagnosed with CFS in 2007.
My sister was diagnosed with CFS much earlier, late 1980s or early 1990s. I don't remember exactly and neither does she. She later came to believe she has depression. Now she believes she has dysautonomia. She has abandoned the CFS diagnosis and thinks the label is meaningless. So she thinks depression and dysautonomia is the complete answer for her. Of course, she is not well, still. She does not believe CFS is a separate entity and doesn't believe it is caused by a virus.
But she doesn't know for sure what is going on.
So I started to write down a summary of the outbreaks of CFS based on Osler's Web. I also am including a list of the news articles, particularly layman to show outbreaks started before it was in the news for mass consumption.
Also, I included any tests that show that CFS is not depression.
I sent my sister a quote someone here posted about difference in depression, where someone would say they don't know what they want to do. But CFS people would give a list.
My sister e-mailed me back saying she monitors a depression message board and she thinks that is not true because many on that board say they want to do things and say what they want to do.
I told her, "Unless they were misdiagnosed. Only 20% of people with CFS have been diagnosed. That means 80% have not been diagnosed or have been misdiagnosed. And depression is the most common misdiagnosis given."
Anyway, if y'all need any of that info I am putting into a summary, let me know.
That's in hand, Aftermath's going to sort something out, I've suggested a sticky thread. Similar discussions in progress on other threads too.
I just wanted to say that I have had ME for many years and after the birth of my son I had severe post natal depression. I had depression for years after that and sometimes it is difficult to tell the difference between depression and ME. They do feel different from the inside though and I got to recognise them. When I wasn't sure then I had a little test for myself. If I was sitting there not wanting to do anything then if I tried and it made me feel better then the depression was stronger and stopping me feeling like doing anything. If I tried to do something and felt much worse - more tired and exhausted then it was the ME that was stronger and stopping me wanting to do anything. That way I could tell whether I needed to rest more at that moment in time or do something (only a little something) It is difficult when you have two conditions at the same time to separate them out. Thankfully the depression is gone now and I am off all the drugs for it and still well and have been for a few years now. Unfotunately the ME is worse than ever. I just wondered if that would help you with your observations about the differences between depression and ME.
Edit: I just wanted to add that I had the ME for 7 years before any hint of depression so they were totally separate onsets for me
Thank you all for your positive comments and I'm flattered but unfortunately while I'm happy to pitch in with suggestions I'm not at the moment able to devote the time and energy that this needs.
I'm fairly new to this website and haven't been keeping up with ME research for many years and safety in numbers may be the right approach (i.e. sharing information and resources with XMRV research into other illnesses. However I have recent experience with a similar lobbying campaign and there are also dangers with this approach.
Keeping it brief this issue concerned new european legislation which would retrospectively remove access to state healthcare for non-French people living in France. The groups affected were those retired before state pension age who were already in the French system, early retired who had residual health cover from the UK government and those receiving state sickness benefits who had healthcare cover provided by the UK as long as they received benefits.
A volunteer lobby group was formed as a spin-off of a general chat forum and through lobbying the UK and French govts, politicians, the European Union and the media significant concessions were won. However a decision was made to prioritise lobbying for those most likely to be affected immediately and not to specifically push for those receiving sickness benefits on the assumption that both Governments would know who the affected groups were. All very logical - but there was also a discernable sub-text that many felt that the early retired were 'deserving' while there was a widespread suspicion that many receiving benefits were 'fiddling/swinging the lead' and therefore 'not deserving'. The result was that concessions were won for the early retired but no mention made of those receiving sickness benefits. Their status remains uncertain.
The point I'm making (eventually) is that ME is the cinderella disease and still attracts hostility in some quarters. Those seeking to carry out XMRV research may be more attracted to those diseases perceived as 'deserving' i.e. those were diagnosis is relatively straightforward, whose effects are more defined (and possibly sympathy evoking) and unlikely to raise public debate. XMRV research into ME could be sidelined in favour of these other diseases resulting in findings that XMRV causes X, Y and Z and 'may be implicated in chronic fatigue states'.
I may be wrong and there is no harm in corresponding with other groups but I feel we have waited long enough and need to push the XMRV ME research rather than XMRV generally. We may be a minority of the possibly XMRV affected but 250,000 in the UK; 1 million in the States and 15 million worldwide is not a small constituency.
As for the policing task I think we have time to kick this around for a while. Some of the things to think about are : clearly defining the aims and objectives, seeking volunteers (from my experience these things can require an immense commitment and some will drop out), can this activity be hosted on this website; what will be done with the information once compiled; will we seek to co-operate with other groups, worldwide?, will we engage with the media etc?
As I said above, the lobby group I was involved with was largely succesful through lobbying the key players plus the media but also because we had recourse to the European Court of Justice. For anyone interested the (now archived) website can be found here :
These are really hard conversations I find, especially because of the difficulty of what you're telling people; in some cases I have to ask myself what immediate purpose it serves but I think at the end of the day I always conclude that people deserve the truth. Sounds fairly clear she has 'CFS' or should I say XAND?
Without this forum I don't know where I would be, trying to get through to people. Anybody who doesn't believe it's a virus, or isn't sure what to think of Wessely, or whatever, people I've been getting nowhere with on any front for years, are all coming round simply with a series of well-chosen links from this forum and a short conversation listing masses of bits and pieces of evidence and answering all their questions. I could have never achieved any of this without the forum.
I had a long spell of clinical depression some years after my onset, it was very clearcut. When it came on I literally couldn't eat, I had no appetite whasoever. I would spend the day working up the willpower to cook a big meal of my favourite food, and then I just couldn't eat it, no more than a mouthful and eventually had to just throw it away. Loss of appetite is one of the necessary symptoms for diagnosis of depression in UK.
All the best with your sister Tina.
In that case, take as much of a lurking brief as you can comfortably do Marco, and nudge us in the right direction. You have a real lot to contribute; if you want to do so in a fairly hands-off way that's great, as far as you're able without too much stress on your life of course. It's taken me a while to adapt to it but for myself I've concluded this is the time to do what I can. That's why I'm going to be late for this meeting at work... So pitch in with suggestions, that will be a fantastic contribution.
I see some of you are up late. I posted and already had to change it because there was a whole new page of posts by the time I did that rendered mine obsolete.
At any rate, I'm very glad to see this discussion. I also think that Marco's warnings about us doing this and having it backfire on us are important to heed.
Tina, I'm glad to see you're reading this post. Your journalism skills are always helpful for advocacy.
I'm here to rage against the dying light with all of you. Whatever is needed and whatever it takes that I can do.
Marco you're not paranoid
I recently read of an anonymous poll of researchers, done by PubMed, where it came out that 50% of them admitted to some kind of fraud in their research. It was all related to getting the results that the funders of the "study" wanted. If the researcher "finds" what the company paying for research wants, he gets hired again and again. If not, he gets unofficially black listed. They lamented the fact that public funding of research has been dramatically reduced in the last 20 years and corporations are now funding more than half of all "research". And getting what they pay for.
This practice is rampant in the supplement industry as well. Every year or so there is a new "miracle" vitamin or supplement. Right now, it's Vitamin D; I remember when it was Vitamin C, Vitamin E, etc; right now it's acai berries; I remember when it was aloe vera and a whole list of other "miracle" discoveries. I figured it out by simple observation over the decades, but reading about how "research" fits in validated what I have noticed.
When a researcher is found out, he is usually not punished severely, as in jail or fines. He recycles his "skills" to the industry he was already promoting. One Dr. Chandra in Canada faked his results for 21 years, getting millions in research grants, some of them to do with female hormones, some to do with baby formula. Once found out, he was fired from his university position - and went to work for Ortho-Nova, the manufacturers of birth control pills. An American whose name escapes me faked his results for decades, was found out, was fired and banned from receiving Federal money for only 4 years and now works for Johnson & Johnson. Essentially, many "researchers" are simply lobbyists for the drug and supplement industries. And the good 'ole boy network of "peer review" is often in the mode of "you scratch my back and I'll scratch yours".
One company that made a drug for osteoporosis went to far as to create a medical "journal" in Australia that then published its bogus studies supporting the drug they were selling. They then quoted this "journal" in their advertisements. The supplement industry has a multitude of these official looking magazines that promote their "research" proving the latest miracle supplement. And they make it difficult to "follow the money" by setting up corporations with official sounding names that conceal who is really paying for this disinformation.
Being skeptical and discerning is not paranoia.
You can also try a Google Site Search
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