23 April 2010

A question of blood.

It has been a while since the last blog entry, not due to lack of developments and newsworthy events in the ME/CFS and XMRV arena, however.

This month has so far seen the beginning stages of a reaction by public health officials to the Whittemore Peterson Institute research findings of October 2009, in which a retrovirus, XMRV, was identified as having a potential connection with the disease process of ME/CFS. Of course, many of us have since witnessed the follow up studies carried out in Europe which have failed to replicate these findings, however please see earlier blog entries regarding the reasons why these fail to contend as replication studies.

Up until this point, people with a diagnosis of ME/CFS have not faced great scrutiny, at least in New Zealand, with regards to donating blood.  Granted, during an ME/CFS relapse, the majority of individuals, due to the symptoms of the disease, may choose, understandably, not to donate blood.  Some may be advised by members of their respective medical team, not to give blood, on account of the potential further detriment to health and wellbeing.  

This makes a lot of sense, because there is notable evidence to say that individuals with ME/CFS have a reduced circulating blood volume compared to healthy controls (Bell, s., 2000), which would obviously be further reduced by the donation of blood.  Specifically, one of the signs associated with a diagnosis of ME/CFS, Postural Orthostatic Intolerance (low blood pressure upon transfer from lying to sitting, sitting to standing etc) would be further exacerbated by giving blood. Some individuals with ME/CFS have difficulty even with blood draws for testing, let alone a full donation. (Please refer to the Canadian consensus document, and the links at the end of this entry,for further information specific to Orthostatic Intolerance).

At the end of the day, despite the detriment to the health of these individuals, up until now, individuals who have, or who have had, a diagnosis of ME/CFS have not been rejected specifically for the purpose of public safety because of their illness status.  This, we can now see, is beginning to change. In Canada, earlier this month, a lifetime ban was placed on any individual who had a past or present diagnosis of ME/CFS (Toronto Sun, April 07 2010). This was followed soon after by New Zealand (Stuff.co.nz, April 21), and blood donor policy is currently under review in Australia with regards to ME/CFS.  These moves appear to have been instigated by the findings published in the Science Journal in October 2009, which identify a potential link between XMRV and ME/CFS.

At this stage, both Canadian and New Zealand authorities are stating that this is a precautionary measure, we still don't have that replication study of the the initial research conducted at the Whittemore Peterson Institute.  However, if XMRV does have a role to play in ME/CFS, then the hypothesis of transmission of the retrovirus by the Whittemore Peterson Institute, is that 'XMRV is thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air. (It is not known whether XMRV is more easily transmitted than other human retroviruses).' Whittemore Peterson Institute, 2010.
It shall certainly be interesting to see if the moves made so far by both the Canadian and New Zealand Public Health authorities, begin a domino effect, and increased perseverance by the medical community to act on the findings of the Whittemore Peterson Institute, and follow up with some replication studies.

On another note, I am planning to write a blog entry on the letter sent by the Whittemore Peterson Institute addressing the McClure et al study, which failed to identify XMRV in individuals with ME/CFS. In the meantime, I have put a link up to the letter itself.


References:


Bell, S., 2000. Circulating Blood Volume in Chronic Fatigue Syndrome. Retrieved April 23 2010 from.http://www.ncf-net.org/library/Bell-StreetenJCFS1998.htm

Atkinson, K., 2010. Chronic Fatigue Donors face Rejection.  Retrieved April 23 from: http://www.stuff.co.nz/national/health/3607226/Chronic-fatigue-donors-face-rejection

Spencer, C., 2010. Chronic Fatigue Sufferers Can't Give Blood. Retrieved April 23 from:  http://www.heraldsun.com.au/news/breaking-news/viral-link-to-chronic-fatigue-sparks-blood-donor-review/story-e6frf7jx-1225856015325

Rose, D., (2010). Viral Link to Chronic Fatigue Sparks Blood Donor Review. Retrieved April 23 from:  http://www.heraldsun.com.au/news/breaking-news/viral-link-to-chronic-fatigue-sparks-blood-donor-review/story-e6frf7jx-1225856015325

Links:

http://www.meresearch.org.uk/information/publications/standing.html

http://aboutmecfs.org/Rsrch/OITypes.aspx

http://www.wpinstitute.org/news/docs/DearDrMcClureaw4.pdf

4 comments:

  1. Hi Emma-Kate,

    Have been enjoying reading your blog.

    Australia's Red Cross are reviewing their donation guidelines, too. Mind you, donors with ME/CFS were already unable to give blood unless they'd made a full recovery. Interesting though.

    Here's a link to a recent news article:
    The Age: CFS 'link' prompts blood donation review

    Hope you're having a lovely week.

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  2. Great to see you got another one up there. Look forward to your blog on the McClure letter. :-)

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  3. Wikipedia Entry

    Xenotropic murine leukemia virus-related virus (XMRV) is a gammaretrovirus that was first described in 2006.[1] XMRV has been isolated from human biological samples. Several reports have associated the virus with familial and sporadic prostate cancer,[2][3] but other reports do not find a link.[4][5] Similarly, a 2009 publication reported a possible association with chronic fatigue syndrome,[6] but three other studies found no evidence of XMRV in patients or controls.[7][8][9] XMRV has not been established as a cause of either disease.[10]

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  4. Unfortunately, Wikipedia continues to fail to clarify accurately that the three studies completed in the UK were not replication studies, and thus, scientifically speaking, have no relevance in addressing the validity of the findings made by the WPI.
    We know that the results published in Science came from a study performed by scientists from the Whittemore Peterson Institute, the Cleaveland Clinic and the National Cancer Institute; we also know it went through 6 months of rigorous review before publication.


    You may also find the letter sent to McClure of particular interest, as it indicates that XMRV was indeed found in the patient population used in McClure's study, prior to the publication of their 'negative' results. The letter can be accessed here:

    http://www.wpinstitute.org/news/docs/DearDrMcClureaw4.pdf

    Meanwhile, there is ongoing difficulty in trying to maintain accurate information on Wikipedia about the potential connection between ME/CFS and XMRV. Currently, I believe there is a group of people aiming to address this, however until we get some legitimate attempts at a proper replication study, the issue will continue.

    Thank-you for posting, and please feel free to ask any questions you may have.

    ReplyDelete