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Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by voner, Aug 14, 2010.

  1. Sunshine

    Sunshine Senior Member

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    Make up tutorials aren't so useful for the scared

    Great post Gracenote.

    The fact you have to feel caution of running and hiding by backing the broken and vulnerable is testimony to the huge mess of what CFS is Gracenote. It's sad we have people defending a 'scientist' who blames others for their emotional reaction to a potentialy fatal disease. It's sad they tell us not to defend someone who's just stabbed us in the back by citing we are 'attacking' the attacker. As you know this is common place amongst people involved with ME, CFS especially in those who do not have either condition, and who pose as CFS patients both online and in person. (Internet is anonymous and no diagnostic test needed for CFS diagnosis). Have faith many people are not who you think they are.

    My personal issue is not so much with patient's views but those of the professional. Patient's are just patients, and have no direct influence whatsoever. CFS funding is steered by politics. Advocacy groups (unless involved in ground breaking scientific research) are powerless with regards to a politicised disease (CFS), that is controlled by men in suits, rather than men and women in lab coats. It's controlled for a reason that XMRV has taught us.

    One way to cope with apparent betrayal is to consider if these people even have your illness, most probably not. Thus there is no betrayal.
    That way, folk who are deaf to your advice are less of a heretic and more of someone from another team. This changes a lot in terms of long term bad feelings. Feelings can then pass, and concentration on the uneducated scientist maintaining unhelpful discussion can be focussed on, instead of their fanboys.

    To Alan Dove's supporters credit, they never signed up to the ME label or were ever given it. Neuro immune disease and the horric consequences of it, are not part of the diagnostic criteria for CFS or indeed the psychiatric professions 'CFS/ME' umbrella term. There is an obvious division on this forum, which to be fair is called ME/CFS so it supports two different conditions with bias to one due to the world health organisation neuro disease 'ME' not being diagnosed in America. Of note, I'm yet to see one post in support of Alan Dove from an ME patient which is understandable as many are in sunglasses indoors and can't bare the glare of the PC monitor and are unable to sit upright or out stretch their arms to a keyboard. Naturally these people have a right to protest and critique someone who infuritates them the same as someone of an ethnic minority would protest and critique an obvious racist who claims only people from certain backgrounds get upset over injustice they help maintain.

    At the end of the day, unless people are annihilated by neuro immune disease, no one cares about you or I or anyone else because people assign to what they understand or desire not what they are not aware of. People confused about supporting a view, often lean towards the person with power and influence. Influential people appear to be the authority on a subject, rather than the student who has been given a free pass to speak whilst others mouths are duct taped.

    In most cases. People with influence and priviledge will win the day. This is how power structures are maintained in most circumstances. Note there is a real 'fight' now in the CFS community to keep CFS as a hodge potch of anything and everything that causes chronic fatigue, and not a pro oxidative incurable brain disease caused by XMRV. Sides will have to be taken and taken they will until politicians decided who is going where.

    The real sticking point is, people with XMRV don't have CFS and have been misdiagnosed. Until the CDC accept this and announce it, then XMRV and other neuro immune illnesses will be allinged to CFS and thus support the name and label CFS, ironically fighting for a totall different cause to others with CFS.
    Hence the Alan Dove comments mixed reaction.......

    This is common in human nature and not really anything to do with disease, more psychology. When one is serially utterly broken, then one understands more about the losing team. However, only a few will come to the aid of the person with the bloodied nose, whilst others will run to the celebrating team. It's easier, less hassle and takes less thought. If 'team' CFS were a football team, the 100% neuro belief of CFS players would currently be on the bench excluded from the match. Those playing the game? One side would be psychological and the other half being a bit of immunology.

    When I first became ill, I knew of no one with ME, and didn't care about them either. Why would I? I was still 'team used to be healthy' and employed. Decades later and the reality of this illness and the reality that people die from it meant regardless of how ill I was myself, I would defend others (who like myself) now watched 'Team CFS' play from the sidelines. In a way, I developed a latent loyalty to people in my situation but it took a long time to develop and many ghastly situations both personal and foreign; reading about others in newspapers and the Internet etc.

    Not everyone's life with CFS consists of waking up, eating, toileting and bed with occasional Internet or if lucky, a visitor once a few months. This is evidenced by the fact someone with prejudiced bigoted views about people with CFS, is still supported by other people who meet the diagnostic critera CFS. When people suffer more, they will understand. Thing is, they won't suffer more so the situation is static not fluid.

    What is a right though, (a human right) is to defend one's own self and others. No 'personal attack' rule on a forum can prevent someone from coming to the rescue of people who have no voice and have just been 'personally attacked' themselves, which is what Alan Dove has just done to at least 250,000 severely affected Americans never mind others around the world. These comments about not replying to disablity mocking is convenient to people who want to stifle debate and criticism of one particular side, obviously! People with severe ME and CFS have no voice, no funding, no media exposure and no hope. All Alan Dove does for these people is dash more hope and increase more feelings of self hatred, shame and hopelessness. He doesn't get 3 hrs sleep a night (or less) due to being short of breath due to heart failure or tire of balancing himself over a female toileting container in bed. Many with CFS do though, hence Alan Dove should correct what he said about CFS patients and show leadership for what was previously a sensible interesting public information show. Ironically, many CFS and ME patients he has just deeply offended regularly listened to - despite his belief science is for scientists.

    As ME and CFS patients, we unite through misery and through a bond of realising and speaking out over injustice. We also become fractal through my previous observation of disagreement of the levels of feeling and emotion 'anti ME' and 'anti CFS' comments cause in people affected with these horrible conditions. Some blow up, some are indiferent and shrug their shoulders, some don't care, and some defend the attacker.

    In a disease with a diagnostic test, this doesn't and cannot happen. In that situation people share the same common unique disease causing factor. With the label ME or CFS, this isn't possible and so there are lots of issues with communicating on a spiritual level with others who share the illness label given to us. Agenda's are the catalyst at the end of the day, and these don't have to be evil or nasty and can be innocent or simply ill advised. We all have personal agenda's. Alan Dove's is that he feels he can talk about CFS with gay abandon, an illness he is not educated in. That is his perogative and it's mine and others to correct him in factual errors and the consequences of loose talk.

    Someone who is house bound for decades will be far more upset of the likes of Alan Dove than someone who can socialise and not suffer every day in unbearable pain (at rest) and maybe wash their body once a week whilst seeing their front teeth are eroding in the mirror yet they can do nothing about it as they cannot get to dentist for physical and financial reasons. Alternatively it may be a life of burning chest pain and vertigo causing permanent disablement leading to opportunities of a love life being executed and physical intimacy amounting to stroking the dog's floppy ears, that happens to be stuffed.

    Either way, tell someone with CFS, ME like this they are mentally unstable compared to those with Prostate Cancer and the comparison is laughably innacurate, but no less hurtful. When one's body is stinking, and decaying due to utter medical exclusion helped by uninformed people like Alan Dove, then they process his comments on an entirely different level and place different meaning on every single word. Guess what, that happened.

    The majority of people with 'CFS' diagnosed in the last 10 years have no idea what neuro immune disease ME does to people as they don't have ME or even heard of it. The same way someone who isn't pregnant has no idea of the pain and psychological trauma (to some) of child birth. What is different though, is men don't speak on behalf of women regarding scientists who mock women who suffer mentally from the act of childbirth. Women speak for women regarding complex maternity experiences and defend other women being verbally tormented. These women would never be accused by others for 'personal attacks'. They would be clapped and congratulated.

    To our cost, CFS patients speak for ME patients, and scientists who know nothing about CFS or ME speak for CFS and ME patients. This is what Alan Dove has done. He makes public statements, and therefore by nature will be criticised robustly for the hurt he causes. He should apologise, but won't. He has no idea people die of ME and CFS, and the vast majority who do die, commit suicide. Talking about ME and CFS in public as a scientist is therefore a procarious matter that should be thoroughly thought out. Alan Dove did not do this, and has been caught out by the furore he has caused in many. NB: The vast majority of people feeling put out are silent due to severe disabilty and by default are unable to protest......unseen, unconsidered.

    Instead of realising the error of his ways, Alan Dove becomes defensive in a blog/post and says people with CFS who criticise see him as an 'idiot'. Strange but very easy to not reply in depth by saying this, and just use a few lines. Unlike people with ME and CFS he earns money, can go on vacation and prepare his own meals, wash, and breathe without difficulty. If we could too, then probably we also would return to upset patients with an Internet soundbite and turn on the ice hockey on the plasma and say 'whatever'...Which is what Alan has done. His choice. People are how they are and we can change no one.

    In his shoes and anorexic knowlede on bulky CFS biomedical research I'd do the same to be honest. Nothing like a negative experience and moment of hindsight to alter an engraved view though. On a ME/CFS forum, ME patients will be the minority and so sadly we get excluded from the majority. That's part of the deal with this condition no one can change it and will only be able to rectify with bombshell moments like XMRV coming along and changing the entire state of play.

    If and when XMRV is accepted in the medical community the severely ill with ME and CFS can go on a illness label vacation (no other is possible) and return with a new label that fits their procarious predicament more suitably that a Chronic Fatigue Syndrome. NB: For some, CFS is an approrpriate term and probably quite useful to explain what is wrong. We are all aware of this, but others are included too. 1 in 4 people are bed ridden and housebound with CFS and ME, that's 25%.

    It's best to let the CFS people without severe neuro immune disablity have their say and us with have ours. That is equality and that is fair. In people not as far down the slippery biological branch that dips into the volcano of acid, Alan Dove would be seen as simply someone with a differing view, rather than someone who's just single handedly ripped neuro immune disease ME (CFS) to shreds by baiting patients with biased preset views that are outdated and unwelcomed.

    Keep the flag waving Gracenote, the flag of hope for change and never surrender. Things will change.

    The WPI are the armada for this change. :)
  2. gracenote

    gracenote All shall be well . . .

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    Thanks, Sunshine.

    But I'm keeping my CFS label along with my XMRV positive status. The Science paper connected XMRV with CFS, a neuroimmune disease. I'm thinking the Alter paper will, too. And the good XMRV research papers are using chronic fatigue syndrome and prostate cancer in the same sentence. The name was (wrongly) given to the original Incline Village outbreak. I want the psychologizers and the CDC and all the dismissive others to have to deal with that first. THEN we can get on with an appropriate name for all of us with this disease.
  3. urbantravels

    urbantravels disjecta membra

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    My HMO recognizes chronic fatigue syndrome as a diagnosis, and my doctor has given me that diagnosis. The California state disability insurance program is paying me benefits based on my diagnosis, and I'm going after the big dog - SSDI - with the same thing.

    Which makes it more or less a matter of survival (and being able to get what little medical care is available for my disease) for me to accept the name CFS, until something better becomes official. I agree that the name CFS is stupid and makes no sense, but it doesn't rank real high on my list of things to worry about at the moment.
  4. eric_s

    eric_s Senior Member

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    I don't like the name either, but just as an example, some years ago, there was something spreading called SARS http://en.wikipedia.org/wiki/Severe_acute_respiratory_syndrome. To me that sounds rather stupid, too. Maybe a better name for CFS would have been Chronic Fatigue and Excercise Intolerance Syndrome. I think the difficulty (before XMRV) was that you should only include things in the name that everybody has and can be proven. And then you end up with a stupid name like CFS. Stupid, but correct.
  5. biophile

    biophile Places I'd rather be.

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    Don't raise your hand at a beaten wife and then wonder why she flinches!

    After hearing Alan Dove's audio comments in earlier podcasts, I had wondered if he would ever become a "problem", not for speaking his mind (which he should be allowed to do) but for feeling the need to frequently insert pseudo-obligatory comments about psychogenesis and "mental illness is real too" whenever CFS is discussed on a virology podcast.

    The seasickness analogy, among other comments, understandably drew heavy criticism from patients, because from our perspective he is bringing up the same flawed arguments that have directly contributed to our poor state of affairs. From his perspective he is being attacked, is defending himself as many people would, but then he also seemed to have shut down any further learning on the subject, a bad sign if you ask me.

    Like most people he is obviously a complete n00b when it comes to medico-political environment of ME/CFS and has no idea how deep this rabbit hole goes (if this was "The Matrix" he would probably prefer to take the "blue pill" and wake up in bed with his wife like nothing happened).

    Oh Alan, why do patients appear to be so agitated over suggestions of psychogenesis and psychosomatic mechanisms? Is it because they are in "denial" about their alleged mental issues and lack the "insight" to distinguish physical symptoms from emotional states? Or could it possibly be that these biomedical patients have been denigrated, abused, neglected and relapsed for years on end precisely because of these very same circular notions? And what's your opinion on the latest NIH/FDA study?
  6. Sunshine

    Sunshine Senior Member

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    Alan Dove doesn't matter at all anymore now we have official recognition. He'll have to check what he says next time before facing complaints, rather than 'complaints he expected from people with CFS'...

    His comments are so blatantly wrong, change the word 'CFS' in his opinion on 'us' and put AIDS, Jew, or Handicaped instead of CFS and there would be understandable outrage.

    Now the FDA has confirmed XMRV in CFS we can add CFS to the list above of minority groups being attacked.

    On a side issue, Gracenote, it's up to you to keep your CFS label and be XMRV+, there is one slight problem. The CDC states anyone who is XMRV+ does not have CFS. Critically for us, what the CDC says is taken as fact both medically and legally. NB: No doctor unaware of XMRV will ignore CDC rulings or classifications for legal reasons.
  7. urbantravels

    urbantravels disjecta membra

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    I think this is very well stated, biophile. I do think that to those not deeply steeped in the horrible political history of this disease as well as its very real biology, it's not always clear that to say ANYTHING about ANY POSSIBILITY of psychosomatic causes is basically to talk of rope in the house of the hanged.

    As a very recently diagnosed PWC, I have been fortunate enough to have come into a medical environment where I have not had *any* attempt by doctors to suggest a psychosomatic cause. Well, OK, there was just one. But generally speaking at my HMO everyone seems to have gotten the memo that they MUST CONSIDER CFS A REAL DISEASE - they are so careful about repeating this every time I go to the psychiatric department!

    I go to the psychiatric department, and also to a private non-HMO therapist for "talk therapy", because I do have depression and anxiety issues, and I am covering all bases in making sure I'm getting treatment. Some issues I had long before I got sick but never cared to acknowledge or confront before; others are directly situational as a result of having my life changed overnight by sudden disability.

    When I first got sick, I even entertained the notion that I might just be suffering some somatic form of repressed issues - not because I'd heard much about that theory or had it pushed on me by any doctors - just because I wanted to be open to all possibilities of something TREATABLE. Well, I'm working hard on my emotional issues, with some success I think. Anybody at all can use help dealing with the emotional/psychological side of dealing with this devastating illness and all the ways it diminishes your ability to have a "normal" life. To me, there's no question that being emotionally upset makes coping with the disease much harder and to some extent exacerbates the physical symptoms - but I'm also very clear at this point that an improved emotional state, and dealing very clearly and openly with the emotional problems that I do have, doesn't do a thing for my physical disease. I still get flare-ups, bad days, PEM when my state of mind is good (or as good as it gets in the context of how much it sucks to be sick and disabled.)

    But again, rope in the house of the hanged. Those who have been more personally affected by the "psychosomatic" bullcrap about the organic disease CFS have often developed an aversion to all things shrinky. (Heck, plenty of people develop an aversion to regular medical doctors after getting blown off or talked down to often enough.) This is another unintended consequence of the way the disease has been treated - many patients can't benefit from objective therapeutic help, either because the therapy-givers aren't clear about what they're really dealing with, or because the patients have been too greatly harmed by misdirected efforts at "therapy." As if it weren't bad enough that the medical doctors haven't had much to offer us.


  8. JayS

    JayS

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    "if 3-6% of the healthy population really is walking around with these viruses in them, is there any point in restricting blood donations from CFS patients?"


    http://alandove.com/content/2010/08/chronic-fatigue-and-not-quite-xmrv/


    If I post a comment I'm going to think long & hard. Gotcha isn't going to help here.

    But there's too much to wade through, at least at the moment, to spend any time on this guy, for me, anyway.
  9. gracenote

    gracenote All shall be well . . .

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    Alan Dove in Chronic Fatigue and (Not Quite) XMRV:

    Dr. Alter in the press conference today:

    Who are you going to believe?
  10. gracenote

    gracenote All shall be well . . .

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    I couldn't resist. I posted to Alan's blog:

    I am still "awaiting moderation."
  11. Esther12

    Esther12 Senior Member

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    Nice reply. Short and to the point. Free of any personal malice he could whinge about, but also in blunt opposition to his own post.

    I need to learn to be more concise with these things. It can make them funnier and more powerful.
  12. CBS

    CBS Senior Member

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    I'm afraid I wasn't as diplomatic as Gracenote.

    I wrote:

    “And if 3-6% of the healthy population really is walking around with these viruses in them, is there any point in restricting blood donations from CFS patients?”

    Are you serious? Isn’t that exactly what several government funded task forces are trying to discern? What about all of the neurological diseases and immune dysfunction we suffer from with little understanding of their true etiology?

    Over the course of a lifetime, what percentage of people will eventually contract MS, Parkinsons, ALS, Alzhiener’s, or other forms of dementia (not to mention cancer – See Eric Klein’s presentation, Is Prostate Cancer an infectious Disease? – http://webcasts.prous.com/AUA2010/html/1-en/template.aspx?section=7&p=7,11872).

    What if we find that 3-6% is actually a very conservative number? MLV’s are known to cause cancer and neurological disease. And what if you were in need of a transfusion (with the very high likelihood that your systemic resources were already severely taxed)?

    I sincerely hope that scientists with a higher level of intellectual curiosity are hard at work on this very question.
  13. gracenote

    gracenote All shall be well . . .

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    CBS, I love your response. Well done.
  14. Sunshine

    Sunshine Senior Member

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    Alan Dove recently stated about himself and his comments about CFS as ''I am an idiot''. There is something we can agree on.

    Alan's views on CFS are outdated and obviously discriminating against a disabled and socially/medically ostracised minority. He should be careful someone doesn't collect his recent plethora of anti XMRV CFS comments and add them to an ME documentary as they will at this rate! That would be terribly embarrassing for a serious scientist involved in educating the public wouldn't it? Never mind his University at Columbia.

    Alan has done such great work in the past, and his position as a scientist in continuing to produce inflammatory views on CFS (and CFS only) is becoming untenable. The fact his partner Laura is a psychiatrist is most unfortunate. She has ample knowledge as an MD to correct Alan on his ignorance over CFS and it's definition, which is not a psychiatric illness.

    Maybe Alan should apologise for any offence caused to the CFS community, delete his blog comments, doctor his original article and get with the programme. That would be sensible instead of becoming the next super star hater anyone can quote, and so by default for thousands more folk with CFS, (of some whom will have influence) to consider. Loose talk costs reputations as well as CFS lives. Many patients with CFS are suicidal.

    I am appalled at his lack of reasoning in this very sensitive time.

    The baiting must stop, or action will have to be taken. Professionals must behave in a professional manner both at work, and in public.
  15. gracenote

    gracenote All shall be well . . .

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    That's great Sunshine. He did say that about being an "idiot." Taken out of context slightly, but then what's good for the goose . . .
  16. alandove

    alandove

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    I'm Not Your Enemy

    Well, now I guess I know where the big crowds of commenters are coming from whenever I post a blog item about CFS. First, I'd like to thank everyone, or at least almost everyone, for reading and commenting. It's the most feedback I've gotten in the history of my personal blog.

    Second, I'd like to tone this discussion down a few notches. The personal insults in my blog comments (which I approved, by the way) were unnecessary, hurtful, and reflected poorly on both the individual posters and the whole CFS community. I'm not out to get CFS patients, and am not nearly as uninformed and prejudiced about this condition as some of you seem to believe. I call it CFS for precisely the same reasons Vince does: it's a simple abbreviation that has been used since the first studies on this disease, and it's at least somewhat descriptive. We already have way too much jargon in biomedical research, so I prefer to stick with plain "CFS" rather than listing a whole bunch of other terms for it. It's strictly a practical choice, not a political one.

    As for the cause of CFS, my contention all along has been "we don't know yet." I realize that some people in this forum feel otherwise, and at least a few folks seem to be thoroughly convinced that XMRV is the culprit. My own assessment of the evidence is that it's way too early to say that. All of the hosts and guests on TWiV who've discussed this have agreed with that assessment, and none of us have an axe to grind about this. Seriously, we don't.

    XMRV might cause CFS. I've said as much on TWiV. But at this point there are at least two other hypotheses that are equally likely for this virus: that XMRV is a lab artifact, or that it's a bystander. The lab artifact hypothesis is certainly getting less likely, but it still hasn't been eliminated. My understanding is that all of the labs doing this work are now exchanging samples, and that there's at least one large population study in the works. Those two efforts should tell us a lot, and I look forward to seeing the results.

    The Alter paper is very interesting and very thorough, and it certainly supports the idea that CFS patients have a much higher-than-expected rate of retroviral infection. I think that's what people mean when they say the study "confirmed" the earlier work. However, the retroviruses the patients are infected with in that study aren't XMRV. So how could XMRV be causing CFS, if the CFS patients in that study aren't infected with XMRV? Yes, the "murine-like retroviruses" Alter finds are very similar to XMRV, but they're not the same. As an analogy, chicken pox and genital herpes are caused by very similar viruses, but their medical consequences are very different. When it comes to viruses, differences matter.

    Assuming Alter's results hold in the bigger studies, we'd be left with a correlation (not causal yet) between murine-like retroviral infection and CFS. That, and all of the other evidence so far, is entirely consistent with the bystander hypothesis - that these retroviruses are simply mounting opportunistic infections. Again, we've mentioned this repeatedly on TWiV. If CFS depresses the immune system (and there's good evidence that it does), I'd fully expect CFS patients to be more susceptible to infection by a variety of microbes. In other words, it's entirely possible - even likely - that CFS is causing the retroviral infection, rather than the other way around.

    I know this kind of uncertainty isn't what people here want. It's not what I want, either. But I also don't want people leaping to conclusions, then using those conclusions to justify taking toxic chemicals and experimental therapies that could do more harm than good. That was what my poorly-conceived balcony analogy was trying to explain. It wasn't meant to offend, and I'm sorry it did.

    My wife's occupation certainly does color my world view, but again I wasn't trying to attack anyone. Quite the opposite. Mental illness carries a huge and inappropriate stigma in our society, so whenever the topic comes up I do feel the need to take a strong stand. In one of the first CFS discussions we had on TWiV, someone actually raised the issue that the disease might be "just psychiatric." I immediately jumped in and reminded the audience that a psychiatric disease is no less real than any other medical problem. Whether there's a psychiatric component to CFS or not, I wanted to head off (and keep heading off) any idea that it's "not a real disease." In other words, I'm on your side whether you realize it or not.
  17. V99

    V99 *****

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    Hi Alan, just in the middle of reading your post. I haven't read the comments about the term CFS, but can I give you a bit of background information.

    This disease was first called ME. A term that was created in 1956 by Acheson, former chief medical officer of the UK. In 1969 it was then entered into the WHO ICD-8 as a neurological condition. It has remained there ever since, and is the disease we are acutely discussing
  18. urbantravels

    urbantravels disjecta membra

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    Hi Alan,

    I wanted to say thanks for stopping by and offering your thoughts. There really is a diversity of opinions and points of view here, but emotions do tend to run high.

    It's important to see the current state of mind in patients in the context of a long history of neglect, dismissal, and even open contempt of this disease for the past 26 years. Many have committed suicide because they are so severely debilitated, their lives are so diminished and conventional medicine has offered so little hope or even acknowledgement of real suffering. Others have 'only' lost their careers, their social lives, their ability to participate in their interests, even partners and family members to the disease. Some have even been abandoned by family and friends because of a belief that they are 'faking' or 'imagining' being sick.

    Very little money or attention has been put into the study of this disease for the past 20 years, and what little there is has often been put toward research into a 'psychosomatic' cause. So far, the theory of a 'psychosomatic' cause has not seemed particularly testable, except to the extent that the "psychiatric" treatments available do not seem to have led to cures or any significant improvement of the organic disease process. Meanwhile, promising research into finding a viral link was essentially quashed and abandoned 20 years ago, in large part because of policy decisions at the highest levels of our public health agencies that favored abandoning the viral/infectious line of research and pursuing a "psychological" etiology.

    I posted earlier in this thread that to talk of 'psychosomatic' causes of CFS is to talk of rope in the house of the hanged. The tremendous anger and emotion in the patient community is very understandable. I think in our heart of hearts, most of us absolutely do not care WHAT the cause turns out to be - we would like real, well-funded, objective research to move forward with all possible speed, and we would like that research to lead to effective, widely-accepted treatments that are the standard of care for all patient, not just the wealthy few who can afford experimental treatments paid out of their own pockets.

    I personally am no fan of the huge alt-med industry that has arisen out of the disease, and I have no intention of rushing ahead with self-experimentation of treatments outside the context of a proper clinical trial. But I never understood what it is really like to have a serious, painful, disabling disease and be told by doctors that there is no 'official' understanding of it and no treatments for it, until I experienced it for myself. I can understand desperation; and I'm a patient who has been sick and disabled for less than a year. I can't even fit my mind around what it must feel like to have this condition for decades.

    We do realize that what we're seeing now is "early science." What is *very* hard to accept is the fact that the "early science" was essentially strangled in its cradle 20 years ago, and that so much time has been wasted and so many lives lost in the interim.

    I'll let those in the UK speak to their situation there, which is even worse than it is for us here in the US.
  19. VillageLife

    VillageLife Senior Member

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    These points you made are worrying me a lot....

    I wish we could find out, what is the process to prove that these viruses are causing *cfs*? what exactly would they be doing to find this out ?

    Hearing about these new MLVs is confusing, I really hope WPI, or dr Goff or Dr Coffin, will do a talk soon about this, it is all very stressful and new information is hard to take in. Yesterday we just had XMRV....now theres a whole family of retroviruses in the equation. We know XMRV responded to various drug studies by dr Singh...but what about these new MLVs, maybe they won't respond to drugs......


    And this might seem a silly question but can you have XMRV and another MLV?

    No one ever said this was all going to be easy!!
  20. V99

    V99 *****

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    Most of us do realise this, we are not foolish.

    As for labs, the WPI have been offering and exchanging samples since the start. The question you should ask is why those labs chose to not use those samples.

    The authors of the PNAS paper appear to disagree with you about the significance of finding MLV's as opposed to XMRV.

    Again, your comment that it does not prove causality implies that you believe every patient to be a fool. If you were to continue reading some of these threads you will find that most people here are not. We know about uncertainty. Plenty of us have had to learn to accept a great deal of uncertainty. How a doctor will behave towards you, or how this disease will progress. We are well versed in it.

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