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From the 1st annual XMRV conference

Discussion in 'XMRV Research and Replication Studies' started by George, Sep 7, 2010.

  1. bullybeef

    bullybeef Senior Member

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    I would really hope that someone will publish a water tight study showing XMRV association with autism. I really believe that story would be too big for the media to ignore, and maybe ME could ride on the back of it.
  2. pine108kell

    pine108kell Senior Member

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    If anyone is going to email this man, I would suggest please being respectful. I did not see anything in the video that indicates he has a bias against CFS. I'm sure he doesn't understand the severity of the disease, but who does? He asked some reasonable questions that any good scientist would. I used to be a research scientist and I could see myself making the same points and asking the same questions that he did. He wants to be careful but that does not mean he would not be open-minded. We meed to make important allies in important places not more enemies.

    Here's what I wrote:
    Dear Dr. Mellors,

    I wanted to thank you for attending the recent XMRV conference. I am a former research scientist (atmospheric science) suffering from CFS. This is a disease that has totally destroyed my professional and personal life. This disease has been marginalized by its name and stigma. I know there are many questions about the role of XMRV in CFS that have not been answered; however, I hope you will adopt or maintain some interest in CFS, as it is currently being neglected. I can get absolutely no help from any doctors because the research in this disease is zero. Whatever becomes of XMRV, we need smart, respected research scientists studying CFS. Thank you for taking the time to read my message.
  3. calzy

    calzy Senior Member

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    :victory::victory:Bravo pine108kell...U of Pittsburgh is cutting edge for medical treatments and discoveries! Can you tell Ima Pa girl? ;)
  4. Sasha

    Sasha Fine, thank you

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    I think that was a really good message, pine - you make a really good point that we should be respectful and appreciative when contacting scientists new to the ME/CFS game. They are not to be blamed for our neglect and we should be doing everything we can to encourage researchers to take an interest.
  5. dannybex

    dannybex Senior Member

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    EXCELLENT LETTER -- and a great exmaple for all of us to follow.
  6. VillageLife

    VillageLife Senior Member

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    CFIDS Association FACEBOOK
    CEO Kim McCleary is on Capitol Hill today updating appropriators about the news from the XMRV conference and our Scientific Director Suzanne Vernon is doing follow-up meetings with NIH staff.
  7. julius

    julius Watchoo lookin' at?

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  8. Recovery Soon

    Recovery Soon Senior Member

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    Letter to francis collins

    Andrea Whittemore urged us to send letters asap to Dr. Collins and Dr. Fauci. The time is now- they are being read. I will send to Fauci shortly. Let's all please send respectful letters and capitalize on the moment.


    Dear Dr. Collins,

    I would like to thank you for the important international XMRV conference at NIH last week. It is encouraging as a CFS patient to see this matter taken seriously at the highest levels of Government. Your attendance and commitment signaled a new day of hope for 1 to 4 million severely ill people, and the safety of the nation’s blood supply.

    The purpose of my letter is to implore you to immediately invest massive funding into CFS/XMRV research, specifically for clinical trials. In particular, I am requesting that you issue massive grants to the Whittemore Peterson Institute, who have shown an uncanny tenacity and ability to think outside the box. They have made enormous scientific strides in such a short period of time, and earned it. In your Rock Stars of Science conference, I observed you promise a NIH resource commitment to independent labs, which will offer cross-benefits to a broad spectrum of diseases. Given the WPI’s commitment to a variety of neuro-immune diseases (CFS, MS, Autism, Gulf War Syndrome), I can think of no better beneficiary.

    On a more personal level, I am thrilled to see you heading the NIH. Your public sharing of your faith in the scientific community shows me all I need to know about your courage. I too have a very strong faith. In fact, along with my family, my faith has been my only shelter in my 4-year ordeal with Chronic Fatigue Syndrome.

    On a Sunday afternoon in the middle of September 2006, I abruptly fell sick with what I though was a common flu. At that point I was a 34 year old, award-winning Television Writer Producer (network names). I was also a peak athlete, intensively training for years. I made a large six figure salary, and worked in a career I had always dreamed of. I was on top of the world in every way you can imagine. Being sick soon collapsed an otherwise charmed life.

    Days turned into weeks, and then months, with no relief from near debilitating conditions. I suffered constant sore throats, headaches, swollen glands, a constantly fluctuating temperature, excruciating fatigue, and severe cognitive difficulties that prevented me from deciphering simple words at times. Pretty soon, I was faking my way through work meetings, when I could not comprehend simple information that was being communicated to me. That was terrifying. Worse, on days when I could muster the energy to attempt exercise, I would experience a strange explosion of symptoms 24 to 36 hours later that left me near bed-ridden. I have since learned that this condition is called Post Exertional Malaise, and is a hallmark symptom of CFS. It renders you incapable of exercise, which was my favorite activity of all.

    With no clear medical alternatives available to me, I soon wasted tens of thousands of dollars on alternative treatments, which did nothing but drain my bank account. Soon after that, it became clear that I no longer had the capacity to work in the profession that I loved so much. Recently, I have been teaching High School, where the hours are more conducive to my condition. But, it’s becoming clear that I soon might not be able to endure even that schedule. The cognitive load is also more than I can handle. Yet, my personal pride has prevented me from throwing in the towel and claiming disability. However sick I am, I will contribute to this country that I love.

    In a matter of a year I had lost my health, career, creative capacities, physical conditioning, ability to play sports, and any social life I had known. Worse yet, because of the demeaning stigma of a maliciously worded disease name, I have had to hide my condition from the world, in order to not be viewed as some sort of faker. Luckily, the support of my friends and family never waivered, because they have respected my tenacity and toughness from when I was a kid. In fact, they recently reminded me about how I used to brag about my superior health, and predict that when I was 50, I would look like a 20 year old. I had never been sick my entire life.

    Throughout the four years of chronic illness, I have maintained my deep faith, trusting that there is a larger good that I am being shown through my horrific ordeal. Like the Biblical character JOB, I feel my mettle is being tested. To date, I know that I have passed that test, even in the midst of invisibility and near mockery from the scientific community and Government agencies, which have chosen to waste research on a psychogenesis for this debilitating physical disease, with the scant funds they have been given.

    I have also heard certain researchers claim CFS is simply depression. The irony is quite striking to me. The incredible fact is that I am not depressed, when by all accounts I should be. I am hopeful and determined. And unrelenting. I will not stop til I am cured. There is a God who is watching, and he is gauging how I handle this absurd set of circumstances fate has delivered to me. And he is proud of what I have done with them. I can say that with no arrogance or exaggeration whatsoever. I have held my head high, even when I could barely walk down the street. Yet, I would be very curious to see how those who brazenly float such demeaning theories would mentally endure under similar circumstances.

    Dr. Collins, from one man of faith to another, I implore you to honor the funding requests I have requested. I have turned to my faith time and again with a spirit of courage and strength, though physically very ill. Indeed, I have spiritually grown a great deal as a result. But I have carried my cross for too long. I have endured too much. There needs to be a speedy end to this road I am on. I just want my life back.

    I have been frozen in time, and am approaching 39. There is still time for me to regain the physical existence I am entitled to. I know that you have the power and purse strings to fast track this research to a speedy therapeutic end. Please do.

    I’ve recently observed several clips of you singing on Youtube. In each of them, I was struck by your infectious passion and love of life. This is what I want back. I want that creative joy back that is buried beneath a sick body.

    Please send massive funding for clinical trials. Please massively fund the Whittemore Peterson Institute. And please say a prayer for me.

    Best Wishes,
  9. Lesley

    Lesley Senior Member

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    Recovery Soon,

    Thank you for sharing your beautiful letter. I think it hits all the right notes.

    Lesley
  10. xrayspex

    xrayspex Senior Member

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    Forbin thats incredible what you wrote about tagamet becoming over the counter when they discovered ulcers need antibiotics instead. Ugh, just adds fuel to my fire.

    Candace Pert sounds GREAT though on the brighter side, so whats the scoop on her treatment for cfs?! will go back and follow the links.
  11. Gemini

    Gemini Senior Member

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    pine,

    Excellent letter, well-written!

    You're right, Dr. Mellors, HIV retrovirus treatment expert, studies viral
    load & treatment outcomes. He has knowledge, skills, & experience
    that can be applied to xmrv/mlv treatments.

    http://www.idm.pitt.edu/directory/bios/mellors.asp
  12. Recovery Soon

    Recovery Soon Senior Member

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    Thanks. It's a little faith heavy- but we've got to strike while the iron is hot and connect to these decision makers any way we can. One letter or sentence might a strike a chord that makes a difference. I hope we actually reads it.
  13. kwietsol

    kwietsol

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    Recovery Soon,

    It was a beautiful letter. If I were the staffer who sorts his mail, I would be sure that yours got through.

    Mary
  14. taniaaust1

    taniaaust1 Senior Member

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    hence why the CFS community needs to be pushing for more funding into the whole CFS/ME in general.
    ..................

    With the Rapid pharmacutical company involvement now... that makes 4 different pharma companies ive heard about being involved in CFS/XMRV.
    It really seems to be the snowball is really rolling now. They will be like dogs to a bone, wanting to make discoveries (and hence lots of money!!). Everything in the world seems to boil down to money!
  15. taniaaust1

    taniaaust1 Senior Member

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    Great but very cautious article on it. I think thou this shows a huge shift in things as instead of critizing the postive studies.. now the medical media is more focused on the negative studies being wrong. From this point things should become more accepted.
  16. Sean

    Sean Senior Member

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    Agree. A little civility and moderation from advocates right now will go a long way.
  17. taniaaust1

    taniaaust1 Senior Member

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    Thanks for sharing that info.. wow.. my mind is reeling from it. Why on earth didnt they get someone no biased or conflicts of interest to chair the conference???

    It is all like one HUGE conspiratory. I wonder if Hillary Johnson will end up writing another book!!!
  18. taniaaust1

    taniaaust1 Senior Member

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    I personally wouldnt mind if i was going to die and things were about keeping me comfortable till i do. That actually sounds great to me compared to what ive been put throu, the loss of friends cause they dont believe one is sick when one is suffereing so much.... the crap our doctors give us... as they dont believe how sick we are. The hell we are getting put throu is inhumane and adds to our suffering... we are completely rejected by so many due to being so sick.

    I once heard one who got cancer say.. she was having an easier time with cancer due to the support she got from others... then what she had with just CFS/ME.
  19. taniaaust1

    taniaaust1 Senior Member

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    I actually took his comment on separating the prostate XMRV stuff from the CFS/ME XMRV/MLV stuff in a completely different way to you. I didnt take his comment to be knocking women and making light of "womens illness". Maybe there are differences between what is going on with prostate cancer and what is going on with us??? (that dont mean our illness isnt serious!)

    **shrugs who knows what is right but we must be careful what we assume... and having an interested researcher flooded with what may end up to be many negative mails.. may take his time away from dealing with what he is studying. i think whatever we do and react to and how we react, needs to be carefully sorted out**

    i know what was happening with some researchers.. they were getting too flooded with mails and it was taking time away from their research effort.
  20. taniaaust1

    taniaaust1 Senior Member

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    I thought this was a great post.. i hope one of the advocacy groups is putting some focus into encouraging people to wrote to those people and push for centres of excellence that are run by ones very familiar to BOTH CFS and ME.

    The CDC needs to be out of things!!

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