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Plea from Dr Bell to donate to the WPI

Discussion in 'Action Alerts and Advocacy' started by fred, May 2, 2010.

  1. Jill

    Jill

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    Just donated 30$ US. It's great Dr Bell has done this. I've emailed 3 friends who care about me and asked them to read the letter and to donate. I've said that funding is at a critical stage as no federal funding has been forthcoming. Also said that the WPI has given US all so much (more than any dr) that they deserve more than I can give in return.
    I also apologised for my asking for their money - but asked them never to buy me presents again. It will be great if they match my donation.
    It sounds like WE all have to get the WPI over this hurdle in time.
  2. girlinthesnow

    girlinthesnow Senior Member

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    Thanks for the gentle prod, have been meaning to do this for months.
  3. Lily

    Lily *Believe*

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    What if every member of Phoenix Rising could give $1 for every year that they've been sick? How many years of our lives have all of us collectively given to CFS?

    If ten million people are sick, how many years, how many lifetimes have been taken?
  4. spindrift

    spindrift Plays With Voodoo Dollies

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    That has got to be the best post EVER.
  5. Nina

    Nina Senior Member

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    Just sent 25 $ via XMRV Global Action on Facebook.
  6. eric_s

    eric_s Senior Member

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    Hi all

    This is my first posting on this board, so i will take a second to tell something about myself. I know there's a special section for this but i want to reply to this thread, so i hope you don't mind ;-)
    I'm Swiss (that's in Europe, haha), now 30 and have been diagnosed with CFS since long enough.. even though it took some time to get that diagnosis, i guess most of us have gone through this.

    It was really exciting to hear about the findings of the WPI. This was the first time that i heard or read something that really looked like there might be something to it. So i'm now checking for news about the XMRV research dailiy. Before that i didn't spend much time reading about CFS or even seeing doctors in recent years, because the doctors could not do anything anyway and i was more comfortable just going on about my life, studying (from home) or doing whatever i like and am able to do. Luckily i have managed (or it happened just by itself) to get well to a point where i feel good most days, so as long as i don't push myself, i feel practically no symptoms at all. But the price is that i don't do much physical activities at all.
    Like all here, i hope very much that the WPI team is right. They would be real heroes then.

    Dr. Bell's letter is very interesting. I don't know him but i'm thankful for every MD or researcher that does something in the field of CFS (as long as he's serious).
    But there's something i have a slight problem with. Please don't personally attack me for this, i think it's very important that each of us can state their opinion as long as it's done respectfully and people stick to the facts. Often i read people saying that there seems to be almost deliberate misinformation on CFS, hiding of facts, mistreatment etc.
    I agree that there are many doctors who deal with CFS patients in an unacceptable way, harming them with wrong treatments etc. I have seen this too, but luckiliy i have always said "no" to this. But honestly, i can't believe that there are docotors or researchers who would try to "bury" XMRV or another explanation for CFS, when there's really truth to it. First of all, i believe most of them are good, normal people who do their best but CFS is so far more or less of a black box (there is no proven cause yet), so they make mistakes in treating it.
    What would they be to gain if they can hide the real cause? Even if some were criminal enough to do that.
    The truth will come to light anyway, sooner or later (i hope very much it won't be long now), so all that would happen to them is that they would make fools of themselves, ruin their carreers and maybe even end up in court.
    Even Wessely. I 100% disagree with him but i don't think he's trying to do harm. Of course it's a huge problem if you live in the UK and can't get serious treatment because of his work, i can understand that. And if it turns out that XMRV is the cause of CFS i do hope that those people will be held responsible. That's what courts are for and you can't play with the lives of people.
    But still i think we should not look for any sort of conspiracy or even believe in one. It makes people with CFS look paranoid. And noone would gain from such a conspiracy, certainly not governments, for example (often i hear people criticize government institutions). CFS creates huge costs. If those people could return to work it would be an immense benefit for their countries. So governmets would be the first to want to find a cure (ok, second, we and our families and friends are first). Also i don't see what insurance companies get to benefit from sick people. They want you to pay and not have to pay out to you, so they want you to be healthy.
    I think we should not go in that direction too far and also don't see ourselves as victims too much. Yes, we have CFS and there is WAY too little funding and there were WAY too little efforts in research but i doubt anyone has bad intentions. They just don't know better and sometimes don't care. Which is bad enough. But we need to try to stay reasonable and objective.

    So, having said that, i wish best of luck to all. I can't wait for further resarch results and i'm glad to see how active the WPI people are (Dr. Mikovits travelling to Spain and the Czech Republic etc.). Even though there are negative studies, this looks not like something dead at all. The WPI people seem to be 100% confident. Let's hope they're right but i'm careful not to say "this is it" until we really know, the disappointment would be too big. But i will donate too.

    Take care
    Eric
  7. Jerry S

    Jerry S Senior Member

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    Welcome to the forums, Eric! You have some interesting and valuable thoughts. We are all in the same boat. This is a good boat here.

    Thanks for making a donation to the WPI. I think it's our best hope now.

    Best wishes,
    Jerry
  8. garcia

    garcia Aristocrat Extraordinaire

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    In the chatroom last night we managed to raise over $100 from the chatroom regulars.

    If anyone has any spare money, now would be a good time to donate!
  9. alphahusky

    alphahusky

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    Follow the money. Money that was supposed to go to research ME/CFS went to other projects. The psychs are getting tons of money treating us like we are nuts. I may be paranoid, but you know what, that doesn't mean they aren't out to get me. I've had this 25 1/5 years and have seen all the politics, and trust me, someone is benefiting from not taking us seriously.

    So anyway, gave $50 last month and $15 right now, and that really hurts because I have no job, my husband gives me no money, and I'm deeply in debt. But I don't want to see WPI go under.
  10. Bob

    Bob

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    I've made a small donation too... I donated some UK pounds... but it's ok... Paypal kindly converted them to US $'s !
  11. BEG

    BEG Senior Member

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    If Dr. Bell says it's so . . . that's good enough for me.
  12. garcia

    garcia Aristocrat Extraordinaire

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    You are extremely lucky to feel no symptoms. Most of us don't have that luxury.

    I will stick to the facts. None of what follows is personal.

    I have said "no" too. But a child or a vulnerable person is not in a position to say "no". Also saying "no" means you don't get any treatment, which if you are asymptomatic like you may not be a big deal, but for some of us it is a very big deal.

    Most chronic diseases have no proven cause. Yet it doesn't stop government and pharma pouring billions into research and treatment.

    I think the truth will come out eventually, but only with great effort on our parts. It won't just drop from the sky. Why are patients who have no money, are in debt, and in severe financial difficulty having to fund the WPI for example?

    No one said he was *trying* to do harm. You are ascribing motives here, which we can not possibly know. A drunk driver doesn't try to do harm. Even a serial killer may believe that they are doing good. That doesn't mean they are doing good. What matters is the action, not purely the intention.

    I hope so too, but if it happens it will take a very long time. The Thalidomide victims took decades (40 years?) to be properly compensated. Haemophiliacs infected with HIV/Hep C in the '80s still haven't been properly compensated. Many of them are dead now so won't be claiming compensation. Personally I doubt we will ever receive a penny of compensation.

    And actually you can play with people's lives and get away with it. Look at Bush & Blair and what they did in Iraq. Over a million innocent people dead and not a war-crimes trial in sight.

    We don't need to look for a conspiracy. All we need to look at the way the powers that be (medical and governmental) have behaved.

    Your logic is flawed. In the long-term you are right it would be of benefit to society for people to return to work. But in the short term it may be incredibly costly. Anti-retrovirals are not cheap. Also governments don't always act in the best interests of society (some would say they seldom do). And the bottom line is they are not looking for a cure. They haven't been looking for the last 30 years.

    Insurance companies benefit from not recognizing illnesses and therefore not paying for sick people because they save money. They are profit making entities, not charities. Their aim is to maximize shareholder value. Indeed legally they are obliged to do this.

    Again you are ascribing motives. We can not possibly know whether they have "bad intentions" or not. But at the end of the day it doesn't matter what their motives are, only how they have behaved over the last 30 years (I recommend you read Osler's Web) and how they continue to behave (not funding any biomedical treatment).

    What is "reasonable" given the dire circumstances some people find themselves in with their whole lives ruined? You tell me.
  13. Robin

    Robin Guest

    Yeah, that's why this is so surprising. Bell's been through the wars. He's not anti-establishment; if I remember correctly his wife was our County medical director years ago.

    As he says in his letter, he saw evidence for a virus years ago. Instead of being taken up with interest and curiosity in the medical community, it was buried after a quick dismissal. He's not a conspiracy theorist or alarmist at all, he's just observed this in the past and suspects it may be happening again. He's had the unique experience of watching many of his patients succumb to this illness. He knew them in their previous lives, he is connected enough to be convinced that it's not hysteria even though that's what he was told.

    There is quite a bit of skepticism for a physical cause for ME/CFS in conventional medicine. Not among all physicians and researchers, certainly, but it's certainly on the table. It's possible that XMRV is simply difficult to detect. Instead of trying to figure out the discrepancies in the different studies, researchers are just doing the same thing over and over and coming to the conclusion that it's not there. It's very understandable why he's so frustrated.
  14. Frickly

    Frickly Senior Member

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    I upped my monthly donation last week and will continue to give extra when I can. I know many of us are not doing great, financially, I think we need to send Dr. Bells letter to everyone we know and ask that they support us and the WPI.
  15. Dreambirdie

    Dreambirdie work in progress

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    Just donated $30. I hope this request brings in a lot more.
  16. oerganix

    oerganix Senior Member

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    Dr Bell is reasonable and objective

    Welcome to the PR forum.

    I suggest you read the book "Osler's Web" by Hillary Johnson. At 30 years of age, you were either just a baby or not yet born when the events Dr Bell talks about took place. I have had this illness for 28 years...28 years of pain, disablility, increasing poverty, disdain, humiliation, abandonment by my government, my family (because they believed the disinformation from the government), my friends (same reason), spouses and lovers (same reason), doctors (same reason).

    At this point in time, my government spends more on erectile dysfunction research than on CFS.

    Diseases getting more $$ than CFS: (Scheduled to receive $5 million next year. $5 million is what the Whittemore family spent to start the WPI.)

    AGING (Is that a disease? We who have CFS die about 15 yrs. earlier than normal): $3172 million

    ARTHRITIS: $259 million

    AUTOIMMUNE DISEASE: $923 million
    (since CFS is thought by many to be all or partly involved in the immune system, why isn't some of this money going to CFS research?)

    BATTEN DISEASE: $6 million (why is this getting 20% more than CFS?)

    COOLEY'S ANEMIA: $22 million

    CYSTIC FIBROSIS: $90 million

    DYSTONIA: $ 17 million

    FIBROMYALGIA: $12 million

    FRAGILE X SYNDROME: $ 29 million

    HEALTH DISPARITIES: $ 2970 million

    HIV/AIDS: $ 3184 million

    HOMELESSNESS: $17 million
    (Many CFS sufferers have become homeless)

    INFERTILITY: $ 82 million
    (Many CFS sufferers have had to avoid having children)

    LUPUS: $ 121 million

    LYME: $ 26 million

    MALARIA: $116 million (1,300 cases in the US, per CDC !!!) (At least a million CFS sufferers, up to 10 million by the Reeves definition, in the US alone!!! Millions more worldwide...)

    The only diseases/illnesses that receive less research money are hay fever, Pick's Disease, and vulvodynia!!

    What is reasonable and objective about this?

    Reeves, the American doctor responsible for CFS research recently came out with a "study" that claims the reason people have CFS is because of childhood sexual abuse and bad mothering!!!!! He got his friends at a nearby University to do this study, costing millions of dollars, and done very, very badly. What is reasonable and objective about this?

    In the past, he was involved with a group of his fellows who diverted the only research money Congress ever appropriated for CFS research. They spent it on other diseases (measles and polio, which already had millions), lab equipment for other labs, and 1 million simply could not be accounted for. If just about anyone else stole money from the government or diverted it to other uses, they would lose their jobs, go to jail and have to pay it back. None of this happened!! They were made to go to a class in "better accounting".

    What is reasonable and objective about that?

    Wessely and cohort have said that awarding support money to people with CFS/ME should not be done because it only encourages them to remain disabled. They also say that such patients should not have tests for their biological symptoms because it only encourages them to think of themselves as having a bona fide illness, instead of forcing them to realize they are only mentally ill with "false illness beliefs". They have set up government clinics for CFS where the only "treatments" allowed or offered are exercise and talk therapy. Those who refuse to go, or cannot get out of bed to go, such as Sophia Mirza, can be "sectioned" or taken by force to mental hospitals and subjected to detrimental drugs and/or procedures. Sophia Mirza DIED after they did this to her. (They had the police break into her home and help take her away because she was too sick to exercise!) The autopsy showed that she had a massive infection of her spine and the nerves near it. In essence, the government health care system in UK killed Sophia Mirza. Many patients with CFS/ME are in hiding from the government system because of their maltreatment and, thus, can seek no health care for anything. In the last week, Dr Sarah Myhill, a UK doctor who specializes in CFS/ME has had her license to practice medicine taken away from her for not following the government's ineffectual "treatment" party line.

    I suggest you watch this video on youtube: http://www.youtube.com/watch?v=7mZMpvtD3rg Read the comments about it and watch some of the other videos about her and her death. Then tell us to be reasonable and objective. She said "NO" to harmful treatment and was forced to endure it anyway. Many of us on this forum feel like that could have been us, or could be us in the future. Even if we are sure that will never happen to us, the fact that it did happen to Sophis Mirza is totally unacceptable on many levels.

    The reason that CFS/ME is a "black box" is not because it is too complicated or too impossible to find the cause and a cure or treatment. It is because, as Dr David Bell (a smart, caring, experienced doctor who had been seeing and treating CFS patients for his whole career) says, various aspects of the establishment do not want to find the cause and a cure/treatment.

    Their behaviors prove they do not want to. WHY they don't want to is all that is still in question. As a group of patients who have been deprived of our human rights, our medical rights and our lives, we have every right to speculate on WHY without being characterized as conspircy theorists.

    History of all areas of human life do indeed show that sometimes conspiracies are done, so the current fad of characterizing all who speculate on WHY as paranoid nutters is simply a technique used to shut us up.

    We're not shutting up until they do right by us. Please join us in educating ourselves about this illness, its history and all the good research that has been done on it, mostly by private research, since our governments are not engaged in finding the truth.
  17. fred

    fred The game is afoot

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    Dr Myhill has had conditions placed on her but has not had her licence withdrawn. The GMC has 18 months in which to bring her to a Fitness to Practice panel which may then withdraw her licence. In practice, the conditions are so unworkable that she will be hard pressed to continue treating patients (e.g. she is not allowed to prescribe certain medicines). All this aside, your point is exactly right: Dr Myhill is being persecuted for not following the UK Government's NICE guidelines, not only for ME, but for other conditions. There is a separate thread on this issue if people wish to learn more.
  18. hidlyn

    hidlyn

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    I enjoy reading the forum posts, but have not posted myself until recently. My name is Heidi Bauer and I help support the WPI in whatever way I can. I would just like to thank all who have donated. It dawned on me a little while ago that we are donating to help each other as much as ourselves and WPI. So, as a patient who may be helped by current and future research at WPI, I thank you from the bottom of my heart. The CFS/ME community is amazing in their generosity at this time. Again, I'm very grateful to you all and have sent in donations several times myself for friend's birthdays, Annette's birthday and just because I can't stand to see the government win out again. I hope we can keep the momentum going.

    http://www.facebook.com/group.php?gid=119741014712459
  19. srmny

    srmny

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    Thank you hidlyn. Let us all respond only to the title of the thread, "Plea from Dr. Bell to donate to the WPI". This is not the the place for "new" member intro's or education. Let's just keep passing the hat!
  20. VillageLife

    VillageLife Senior Member

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    Doctor David Bells - Appeal

    David S. Bell MD, FAAP
    Lyndonville, NY 14098

    May 1, 2010



    To my friends with ME/CFS,

    I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

    Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

    It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

    In 1985 an outbreak of CFS hit Lyndonville NY and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

    I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."

    Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).

    We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? And the Band Played On.

    It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

    But there is an alternative. We cannot wait ten years for science to grind out its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Let's see, that’s…I need a calculator. May 12 is our day. Let's do this.

    After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.

    For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.


    Thank you.

    David S. Bell MD, FAAP

    1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.

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