1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

sparodic Vs outbreak?

Discussion in 'XMRV Research and Replication Studies' started by joyscobby, Nov 4, 2009.

  1. joyscobby

    joyscobby Senior Member

    Messages:
    154
    Likes:
    0
    the UK MEA latest statement states

    In the pivotal Royal Free Hospital outbreak of ME back in 1955, far more than 4% of a previously healthy population of doctors and nurses contracted an unknown infection at roughly the same time (the hospital had to close due to lack of staff). This fact would question the role of XMRV as a key predisposing factor if it only occurs in 4% of the population

    http://www.meassociation.org.uk/content/view/1068/216/

    Since ME/CFS is not a notafiable disease how can there be a definitive defenition.

    This has came to my mind before xmrv due to my own experience. When I was first diagnosed in the mid eightys it was assumed that I was sporadic. However subsequent to that a close friend of mine and also a close friend of my fathers also came down. I lost contact with my friend as we were both ill but my fathers friend also suffers to this day (he has also recently had cancer (bowel I think) and a kidney removed.

    Anyway, many years later I made friends with my sons friends mother and as it turned out she also has ME. They live in a different area but she also worked in the London area as a nurse at the time of the not far from and at the time of the Royal Free outbreak. Some one on here stated they were born in that area around that time.

    Basically what I am saying or asking is has anyone ever tried to map out the so called sporadic cases to see if there is any link. I have tried to think how this could be done. The only thing I came up with was could use google map.

    I just wondered if anyone knew of any studies or of a way such a study could be conducted. Curiousity and all that.
     
  2. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    I don't personally know of such a study. It doesn't mean it was never done. But I lived in Suffolk county in the UK and there was quite a little cluster in two towns that I knew of. Two friends of mine developed M.E. - one a couple of years before me, and the other about a year after me. Running a local support group, I came across others who had become sick in that area ... with about forty miles between the two towns I lived in during that episode. Almost everyone fell ill between 1990 and 1994.

    I think that 4% only refers to healthies.
     
  3. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    :( I wish I were a more patient person.
     
  4. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    First, they are automatically assuming that ME is caused by people who already carry XMRV asymptomatically and then exposed to a secondary virus that triggers the condition. I haven't seen anyone conclude that XMRV is "a key predisposing factor" as they say. This is only speculation and there are other possibilities. We don't know how XMRV is transmitted. The outbreak could have been caused by XMRV itself not a secondary virus that causes ME in people that carry it already.

    Second, even if XMRV is only transmitted by blood, in 1955 hospitals weren't very hygienic and it could have been spread by infected needles or whatever.

    Third, they are also assuming XMRV existed in 1955. We don't know when the virus came into existence.

    Fourth, they are assuming that the 4% XMRV prevalance that exists today is the same as what existed in 1955, which makes no sense at all.

    Finally, what is really known about the 1955 outbreak? Now we have much better diagnostic criteria like the 2003 Canadian definition. Today we know ME/CFS as a disease that is almost impossible to recover from. How long were these people sick? Common viruses that we know of today had yet to be discovered in 1955. Maybe yesterday's ME is not the same as today's ME/CFS, which seems to have started in the early 1980s.
     
  5. Alice Band

    Alice Band PWME - ME by Ramsay

    Messages:
    175
    Likes:
    0
    UK
    CFS since 1988, I agree with a lot that you say except for some comments about the Royal Free outbreak. A great deal is know about that time and Dr Ramsay himself was there and wrote a book.

    I went to a talk by him about ME and the Royal Free outbreak. I corresponded with Dr Ramsay and other UK ME doctors. Saw some of them myself.

    Some of the patients are still alive and still have ME (I know of 2 of them).

    Dr Ramsay was a very good clinician and a great deal of what we know about ME was from him. I don't think that the Canadian Criteria is as good for epidemic ME as an examination by someone like Dr Ramsay or his book. That is ME, and as you said ME of that time.

    It may be that ME/CFS is different from ME pre 1980's USA outbreaks, as you said.

    We just don't know right now how this will be for all these different times and groups.
     
  6. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    I did not know much about the 1955 outbreak so thank you for clarifying those points, Alice. I didn't meant to downplay it, but just wanted to note that the 1955 outbreak could be the same thing as the ME/CFS we know of today, or it could be different. "We just don't know" as you said. The point was that I find the UK ME Association statement that was quoted in blue in the original post just bizarre, I don't see why they are trying to refute a conclusion that hasn't been drawn yet by assuming a premise that also hasn't been established yet either. Poor use of logic on their part.
     
  7. All I know about the Royal Free outbreak is the ward where it happened was knocked down and is now buried under tarmac, rather like the Pentagon lawn.
     
  8. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    937
    Likes:
    105
    London, UK
    The existence of ME/CFS outbreaks is possibly the achilles heal in the XMRV theory. However there are possible explanations. It is theoretically possible for a retrovirus like XMRV to piggy-back on another virus like e.g. EBV or even flu.

    In fact at the CFSAC meeting Dr Peterson specifically asked this question to Dr Coffin, and he replied yes it was possible. I'm not saying this is the explanation for outbreaks, just that it is theoretically possible, and right now we don't know one way or another.
     
  9. Katie

    Katie Guest

    Hi, I'm new here but I've been lurking since the XMRV news as google led me here to this fantastic forum.

    I know there are a lot of questions surrounding transmission but could it be possible that water supplies could carry XMRV? For example, if a mouse/mice infected with XMRV died in water store or water tank and subsequently rotted and released the XMRV in its blood, could the retrovirus survive in the water? I don't know if that theory has any legs but it's a thought that interested me.
     
  10. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    Some of the questions being posed in this thread are the sharpest and most intriguing questions of all.

    I too have been starting to explore the various outbreaks and comparing with accounts of sporadic incidents, and wondering what tentative conclusions one can reach about the epidemiology based on the known patterns - there's a lot of information scattered about.

    I was researching this subject last night. It was very noticeable that no decent work seems to have been done on linking or comparing clusters, I still haven't found an encyclopedia/map, but it would be a brilliant project to GoogleMap that, perhaps put up a site putting it out to the public somehow?

    One thing that stands out is that each of the tightly-defined clusters seems to have very 'homogeneous' symptoms: everybody got some very similar symptoms related to specific co-viruses - symptoms that are not typical of all CFS patients or even of other clusters. Each outbreak is different, depending on the viruses involved. This does lend support to the theory that XMRV is a passenger in other viruses - perhaps it even has a kind of symbiotic relationship with these other viruses, piggybacking on them and unpicking part of the lock of our immune system for them...

    The other angle that interests me, though, is fungal spores. I haven't seen a Coffin-grade confirmation that XMRV could integrate into fungal DNA and infect us via molds and spores, but this sounds feasible to me, does anybody know more? Apparently in the Incline Valley outbreak there was a weird-smelling mold hanging in the air just before everyone got infected, and I read accounts of people who date their illness back to incidents where they experienced this mold. Mold theories would tie up so many loose ends in the mystery for me, particularly in relation to my own experience, and they would seem to fit well with things like Sick Building Syndrome as well.
     

See more popular forum discussions.

Share This Page