The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Fibromaylgia and XMRV?

Discussion in 'XMRV Research and Replication Studies' started by greybeh, Apr 16, 2010.

  1. greybeh

    greybeh Guest

    Has anyone come across studies done (or in the works) of whether fibromyalgia patients could have XMRV? I know that the Whittemore Peterson Institute tested a VERY small sample of fibro patients and I believe 60% tested positive.

    Around here, doctors do not seem to distinguish between fibromyalgia and chronic fatigue syndrome. I assume there will be lots of patient-population overlap because some doctors seem more comfortable with the fibromyalgia label.

    I would like to have information to share with other fibro patients about what's going on in research and I figure that some of you know how to follow the studies much better than I do, to know who is doing what. I am eager for news, just as you surely are.

    Thank you so much for your help!
     
  2. Diva55

    Diva55 Member

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    Hi Greybeth
    My main diagnosis is FM although CFS was added in much later.

    I have been accepted into the WPI UK study (although haven't had the blood draw yet). Judy said she wanted to cover people with overlapping diagnosis such as FM.

    I presume more people with FM will be included but I don't know how the data will be presented - ie if we will know how many people with FM are postive or negative.

    I have a feeling that Judy is just trying to prove the XMRV is present in the UK irrespective of their diagnosis as no firm criteria of diagnosis has been requested.

    Best wishes
    Diva

     
  3. omerbasket

    omerbasket Senior Member

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    I know that a study that is being done in sweeden should test 20 fibromyalgia patients (as well as 120 ME/CFS patients, 20 IBS patients and I believe one or two other groups of patients). It was published, I think, about 5 months ago, and then they assumed their study would be done by the spring or summer of 2010.
     
  4. serenity

    serenity Senior Member

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    Austin
    my primary diagnosis is Fibro. i assume, tho i could be wrong, they will turn out to be a hop skip & a jump away from each other. it's all so similar, that i think if they find XMRV causitive for one they will for the other. maybe it's just wishful thinking on my part but i've almost stopped thinking of them as seperate illnesses myself, almost.
     
  5. hensue

    hensue Senior Member

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    my diagnosis is fibromyalgia from Emory hospital in Atlanta ga from a neurologist. I find the symptoms so similiar especially the crash everyone talks about after excersize. I went ahead and got tested through VIP in October and I def positive xmrv.
     
  6. Victoria

    Victoria Senior Member

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    Since 85% of the symptoms of FM & CFS overlap, one would assume there's a distinct possibility of FM patients having XMRV.

    I am another person who has been diagnosed with FM (May 2006), but last year my Dr suggested there a high probability that I have CFS also.

    I have not been through the range of tests to prove/disprove CFS, as most of my current pain is around severe disc disease & back problems (sciatic pain) & foot problems.

    Now I've finished full-time work (nearly 8 weeks ago), alot of my hand, wrist, elbow, hip, leg pain has gone. The repetitious typing & data entry was a big problem with me. I am just starting to do a lot more computer typing in the last couple of weeks. Once I get pain, I get off the computer asap.

    Now I'm home, I can also move around at regular intervals during the day - at work, sitting at a desk for 8 hours was very detrimental to my lower back pain as well.
     
  7. serenity

    serenity Senior Member

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    Austin
    Victoria, i am much like you - daignosed with fibro, know it's likely i have CFS as well, central problem back pain (upper & lower)
     
  8. ukxmrv

    ukxmrv Senior Member

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  9. omerbasket

    omerbasket Senior Member

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    Where did you hear about it being delayed? Do you know why? When it should be finished?
     
  10. ukxmrv

    ukxmrv Senior Member

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    I emailed ME-Research and asked about it (as I thought it was supposed to be released in the Spring). Sorry no idea why it is delayed and I don't have permisison to repost their email
     
  11. omerbasket

    omerbasket Senior Member

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    Okay, thanks a lot!
     
  12. *GG*

    *GG* Senior Member

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    Not sure where you are at Greybeh? I was diagnosed with CFS in Sept of 2005, Fibro in Oct of 2008. No XMRV test yet, but will post when known, perhaps a few months from now?
     
  13. greybeh

    greybeh Guest

    Hi there! I'm in Pittsburgh, PA.

    I was diagnosed with fibro in 2007, but I've had it since at least 2003 or 2004. They told me I was "depressed."

    I had just lost 175lbs through a healthy diet and exercise and really, really wanted to maintain that lifestyle but was too fatigued to exercise like I had been and I was hurting all over.

    I couldn't believe that I was theoretically healthier than I'd been in years but I could hurt so much and feel too wiped out to keep up with exercising. Unfortunately, I have gained most of the weight back, between the years it took to get a proper diagnosis and now the medications that put on the pounds. I haven't given up, though.
     
  14. andreamarie

    andreamarie Senior Member

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    overlapping conditions: interstitial cystitis association website

    If you go to the interstitial association website, and click on ic, you will see overlapping conditions.
    I got i.c. thirty yrs ago and cfs fifteen. Every symptom on this board is mentioned (there might be one exception, e.g. lupus). I have a history of very mild fm, that is in remission. My i.c. is in remission, but I am now having problems with vulvovaginal and pelvic floor issues. Most people in my initial i.c. support group had ibs; ironically even though I have Crohn's disease I do not. Some were being dx with fm but this was thirty yrs ago when it was very difficult to get an fm dx. Many had back pain that I suspect was later dx as fm. There were about twenty people in the group and it seemed that almost all had overlapping conditions that we now see in CFS/FM. This simply cannot be a coincidence. When I had my blood drawn for study, I had to make it clear that I had i.c. and not irritable bladder.
    I.C. has significant pathology that can be seen on slides; I have microscopic hematuria in urine even when I am asymptomatic. Because i.c. has significant pathology, it would be objective to use in a study. I am sure there are patients with fms/cfs and i.c.
     
  15. serenity

    serenity Senior Member

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    Andrea, i have a friend with IC & IBS & i sure see similarity in our symptoms sometimes. she is a decade younger than me, but i suspect she will turn out to have CFS at some point.
    i see them all as related.
     
  16. 2bushes

    2bushes Guest

    Fibromyalgia and XMRV

    Hello Everyone,

    This is my first post but have been around for a while. My story is much the same as eveyone else's so I won't bore you with all of it. I was diagnoised with FM in 87 after a few months of leg pains and not sleeping. I was put on Elavil by a rheumatologist. I would only need 1/4 to 1/2 the lowest dose and thought I was doing well. In 93, after a year of unrelenting stress, sick parent in another state, daughters wedding, having to have a knee scoped after thinking I could paint and paper the whole house myself, mother-in-law's death and the final straw the flu shot. I had the flu that would not go away. The rheumatologist then told me I had CFS, that FM and CFS were one and the same. I am not sure about that but quite sure they do overlap somehow at least for me, they did and I know of others as well.

    I slowly made my way out of the hole, it took eight years. I was not 100% well but 80 and a good 90 at times. I could actually do more than my well friends. I got through several stressful situations..planning and building a home and my mothers death. A friend and I made all the Xmas decorations for our community and I was chairperson for 6 years. I was VP of a social club and also belonged to a supper club of 12 couples. I had my tricks and freezer to help but had dinners for 24 from scratch. I did that for 7 years, once a year. Needless to say I enjoy cooking and at one time had a small catering business with a friend..before I ever heard of CFS/FM. I was having a very good time and was a good actress when I needed to be. It all fell apart after 8 years last April. I knew it was coming, the panic attacks were the first clue same as in 93. The second was walking in the sun and feeling very sick. All that had gone for eight years. What else could come and go like that but a virus? Amazing how the OI was totally gone. I could go to the beach and was painting the shutters on the house in 100 degree weather. Eight years sick and eight years almost well and then slammed again.

    I have been on Yasko's Simplified Program since the last week in September. I had the blood draw for the Methylation Panel and started the protocol as soon as I sent it. Unfortunately, the lab was moving and their was a mix up so will have the test soon, I think they are up and running. I had to go quite slowly still the full program every other day. I know some have gone slower. I am detoxing like crazy today...not fun.

    I am so happy to have found this group and thanks to Cort and all his helpers.

    Margaret
     

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