Notes by Dr William Weir from 8th Invest in ME Conference, May 2013
From Invest in ME's Facebook page:
Notes made by Dr William Weir at the 8th Invest in ME Conference, May 2013.
Permission to repost.
INVEST IN ME
Synopsis of proceedings of 8th International Conference held on 31st May 2013. Dr William Weir FRCP (Lond) FRCP (Edin)
The main theme of this conference focused on the three burning
questions which all ME sufferers want answered, namely what causes ME,
what is being done to discover this cause and what treatments might be
effective? What was very encouraging was the impressive cast of speakers
from around the world whose scientific credentials could not be
challenged. Happily, none of them were psychiatrists, as gradually the
psychiatric, biopsychosocial theory of ME causation is being consigned
to the dustbin of history. There is now far too much high quality
scientific evidence indicating that ME is due to immunological
dysfunction and many of the speakers stated this principle very
forcefully.
There were four main categories of speaker. Firstly
there were those who talked about the organization of studies, which
included the collection and computerisation of data (such as case
histories) and biological material (such as blood and other body fluid
samples). Clearly, in the USA at least, work of this nature is now
getting off the ground and a large effort is being made to establish a
“biobank” of biological materials from patients which will be made
available to researchers. Here in the UK a biobank has already been set
up, based at the London School of Hygiene and Tropical Medicine to
where blood samples are being sent for cold storage.
Secondly
there were the immunologists who described the immunological
abnormalities seen in ME patients. One of the frustrations with ME is
that, although there are always across-the-board abnormalities, those
seen are never as consistent as they are, for example in AIDS where one
particular type of immunologically active cell is consistently reduced.
However one of the speakers came out with the opinion that: “if any
doctor now thinks that these abnormalities are due to psychological
disorder and that exercise is the cure, he/she should be deregistered”
(He was from Australia).
One phenomenon which is now well
recognised is the “cytokine flare” which follows physical (and mental)
exercise. Cytokines are substances produced by the immune system as part
of a normal immune response to the presence of an invading bug, be it a
virus or bacterium (or other, such as a malaria parasite). Interferon
is the one most people have heard of. They make you feel ill as part of
the body’s normal defence against infection. In ME however they appear
to be produced inappropriately, and go on being produced in the apparent
absence of a recognisable infection. Furthermore there is an abnormal
increase - “flare” - after exercise which now explains the problem of
post exertional malaise. Here, at last, is direct evidence that Graded
Exercise Therapy (GET) is very likely to be harmful.
Thirdly the
issue of a possible virus infection was addressed. This would provide a
logical explanation for the ongoing immunological activity – finally
identifying the metaphorical fire from which all the immunological smoke
was coming. The XMRV story was reviewed and provided real insights into
the complexities of identifying a “new” virus. The term “new” meaning
hitherto undiscovered, as it is fully appreciated that there are
probably very many undiscovered viruses out there in the biological
ecosystem, often being carried silently (ie without illness) by a large
range of animals, including humans. The disease -causing potential of
these viruses is unknown and may have very long incubation periods with
infection preceding the development of disease by many years. For
example It has been suggested that Parkinson’s disease is due to such a
virus, and the same may be true of ME.
As many will know, XMRV
was finally recognised as a contaminant of the cultures in which
attempts were being made to grow a new virus from samples taken from ME
patients. The initial excitement over the discovery of XMRV was dampened
when this was realized, but has not deterred the search for other
viruses. To apply historical perspective, when influenza was first
researched, a number of bacteria and viruses were initially but
incorrectly proposed as the cause before the real villain was
identified. Some very sophisticated techniques are now being used in the
search for the real ME villain, one candidate being a form of
retrovirus known as a “human endogenous retrovirus” (HERV). These are
viruses which are already present in human genes, and usually inactive
(ie not replicating). Nonetheless they probably can be turned on again
and they have been postulated as causes of a wide range of diseases,
including cancer and autoimmune disease. Thus ME may well be due to a
HERV.
Finally there was a presentation of the Norwegian study
of rituximab therapy which shows promise in the treatment of ME. Twenty
of twenty eight patients improved significantly although there was a lag
period of two to three months before improvement occurred. Rituximab
specifically targets the CD20 lymphocytes, taking them out of
circulation but well before symptomatic improvement – suggesting that it
is antibodies produced by the CD20 cells which cause the symptoms, but
which require the 2-3 month period to clear from the body. This study on
its own supports the immunological hypothesis of causation, further diminishing the psychiatric attribution of an “abnormal illness belief”.
Rituximab does however have its drawbacks. It is potentially very
toxic, also very expensive and no UK doctor would be able to prescribe
it for ME at present. Further studies are in progress.
No comments:
Post a Comment