ANZMES recommendations regarding
XMRV
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Introduction - the first step
Visiting
your doctor verification by independent centres Tell your friends and relatives Connection of XMRV to ME/CFS Donating blood Timeline of events What you can do Blood test for XMRV Negative statements Volunteer for research Keep up to date Drug treatment aimed at killing the XMRV Treatments Current treatments aimed at treating ME/CFS Not so significant findings Transmitting the virus No lobbying at the moment |
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The recent news regarding the finding of a virus associated with ME/CFS
called XMRV is exciting.
If this research turns out to be legitimate - by being replicated in
other independent laboratories, which so far it hasn’t been - then it is
an exciting first step.
And currently this is all that can be said with certainty – that it is a
first step.
But in research this ‘first step’ is often the most important one, and
if this has been taken then it is a very significant finding for ME/CFS
indeed. However it underlines the fact that many further steps are still required.
Verification by
independent research centres
In our modern world, news items of current events are broadcast around
the world virtually instantaneously and this is no different in the
field of scientific research.
However, with regards to science, this “immediateness” has a downside in
that it can imply to the public that research, such as the finding of
XMRV and its connection to ME/CFS, is accepted scientific “dogma” or
fact, when it is far from this.
Any initial finding has firstly to be verified by other independent
research centres.
After this further studies need to be performed in order to understand
more about the finding.
In the case of the discovery of a new pathogen, such as XMRV, there are
numerous characteristics and relationships which need to be determined.
Specifically of interest to us, any connection of XMRV to ME/CFS then
needs to be made.
If such a connection exists then it needs to be determined whether XMRV
causes the illness, either alone or in conjunction with other factors,
or if it is an epiphenomenon ie. an association with ME/CFS but not
directly related to the cause.
All these studies will take time.
Once the investigations are completed even this does not signal the end
of the process.
Following the studies further time passes, while scientists discuss the
findings and then eventually arrive at some sort of consensus concerning
them.
The timeline of events
If XMRV is eventually considered to be significant in ME/CFS the
timeline that it will take before the recent news could affect us in
some practical way is months to years in length.
We shouldn’t however be disheartened by this.
As explained above the first step may have been made and without this
there would have been many more decades
ahead before
we had even
the hope of
reliable
treatments. This is the best news the ME/CFS world has had for many years and right now sufferers should at least be “quietly” celebrating.
Blood test for XMRV
There is little point in arranging to have a blood test
for XMRV yet.
They are expensive, probably several different tests
are required rather than just one and it would be difficult and
expensive to send blood samples to the laboratory in America.
Currently the American laboratory is not offering the
test to overseas people, so for New Zealanders this makes it impossible
to get anyway.
Also the test is not conclusive, so it is not known
what a positive result means in a particular person.
Your doctor would not know how to interpret the
results. In other words there is a lot that needs yet to be understood
about the test.
If XMRV is significant the test will become available
in New Zealand and at that time it may be useful to have it.
Even then there will be problems. An example of this would be in those patients in which the test is negative, but who still seem to have ME/CFS clinically. Medical tests never provide the ultimate answer and this can be difficult for lay people to understand.
To doctors laboratory tests provide only part of the
picture. In medical practice they are used merely to confirm or deny an
already existing hypothesis.
If research is carried out in New Zealand to find If XMRV exists in ME/CFS patients in this country then it might be helpful to volunteer for this.
However this would be primarily to extend our knowledge
of the virus rather than to provide any very useful personal information
– for the reasons explained above.
Drug
treatment aimed at killing the XMRV
There is currently no reason to commence drug treatment
aimed at killing the XMRV virus.
As explained we don’t yet know XMRV’s relationship to
ME/CFS and we don’t yet know how it should be treated.
“Real” treatments for any illness can only be designed
once the nature of the underlying mechanism of the illness is
understood. Hopefully we may at last be heading in this direction
with ME/CFS.
Current
treatments aimed at treating ME/CFS
This is why I have always said that taking current
treatments aimed at treating the illness (other than alleviating
symptoms such as sleep disorder or pain etc.) are pointless and a waste
of good money while the underlying nature of the illness is unknown.
Until it is known any “curative” treatments are simply
stabs in the dark, and this certainly applies to all current alternative
treatments, including expensive dietary supplements.
Let’s hope the current news means we may soon be on the track towards
objective and effective treatments and that these aren’t now so far
away.
Currently there is no need to worry about transmitting
the virus and thus ME/CFS to others.
There has never been any evidence that ME/CFS is purely
contagious and this has not changed.
Especially, you should not restrict your daily
activities in order to prevent any such transmission.
There is little point in visiting your doctor or other
medical personnel regarding XMRV - other than to possibly educate them
on the latest findings, but hopefully most will have heard of it by now.
Tell
your friends and relatives about the research
It is reasonable to tell your friends and relatives
about the research but make sure that they understand that so far it is
only an early and interesting finding.
Ensure that they don’t think that this is already known
to be “the answer” because if proven false this could lead to further
embarrassment and dismissal of the illness yet again by relatives, the
media and the scientific community.
The last thing we need in the ME/CFS world at the
moment is for yet another story to blow up in our faces and create
further disbelief about ME/CFS.
Instead if we appear calm, rational and objective about
the news (even if we are excited inside) then this might help the world
in taking the findings seriously.
As a beneficial side-effect this attitude this should
also lessen the chances of anyone attaching psychological labels to the
illness.
Patients should refrain from donating blood until
ME/CFS is better understood, in case there is an infectious cause. This
has always been good practice even prior to the release of the XMRV
news.
While there is little to do on a personal level at the
moment there are things that you can do that will help the research
process and accelerate the obtaining of answers.
•
Continue to educate all those around you that you can.
•
Continue to lobby for advancement of the cause(s) in any way
possible.
•
Donate money to research if you are able to. Even if this news
should lead to a dead end at least it has stimulated interest in the
illness again and other beneficial research may stem from this renewed
publicity.
•
Volunteer for research studies if asked to.
Just as overly positive statements about the illness
should not be made, neither should the opposite ie. that the research is
non-valid.
Neither view can be put forth at present until more is
known.
In statements to the media there have already been
people stating that the research is unlikely to be validated.
This is an unexpected stance given that presently we do
not know one way or the other how things will pan out.
It suggests that those stating such viewpoints must
have agendas which back non-physical explanations for ME/CFS.
Similarly media releases from some spokespeople from
the alternative medicine field have also opposed the finding.
One can hypothesize that the reason for this position
is that the finding of ‘a virus’ as the basic cause of ME/CFS may have a
negative impact on the future incomes of such people. Others, such as the insurance industry, may also be in opposition to such findings, similarly for financial reasons.
Keep up to date - follow the story – remain objective
Because of this uncertainty and because there are
widely differing views on the research it is important to continue
following the story through media releases, journals and reliable
Internet sites.
We can expect much new information, and a lot more
discussion, about the finding to occur over the next few months.
It is important that we remain objective but also
hopeful as more information unfolds.
It is essential that the on-going studies are carried
out methodically and carefully so that mistakes aren’t made in learning
more about the virus.
If this is done hopefully the real answer will be known
and with luck the day that this occurs won’t be too far away.
What can be expected in the future?
Significant findings?
If the finding regarding XMRV turns out to be
significant then what can be expected in the future?
Hopefully it should generate treatments for ME/CFS.
Our current knowledge of the virus however indicates
that this is going to be more difficult than simply using existing
HIV treatments. This is because many of these treatments are aimed at the HIV virus replication (reproduction) phase and it appears that XMRV may replicate much less frequently than HIV, making it less susceptible during this phase. Ironically this makes the creation of a vaccine to prevent the disease in others simpler because the slower rate of division leads to less immunological variants.
If the finding turns out to not be ‘The Holy Grail of
ME/CFS Understanding’ then we should not be too disappointed.
If this is the case perhaps it is necessary to go
through several of these “near miss situations” before the ultimate
answer is found.
Even with this scenario there will have been positives.
The interest surrounding the media release about the finding has
already enticed new researchers into the field of ME/CFS research.
Also, more money for “useful” biological research into
ME/CFS will become available.
Because of the uncertainty regarding the status of the
findings sufferers should refrain from “lobbying” or “advising”
governments or similar bodies until more concrete evidence is
available.
As an organisation this is also the position that
ANZMES is taking as it is thought it would be irresponsible to take
a strong stance when little is yet known.
Should a role for ANZMES become obvious at some later
time in this regard then that step will be taken as is thought
prudent.
In the meantime the ANZMES committee is following the
story with hopeful anticipation.
Medical adviser to ANZMES
16 November 2009
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