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Newsletter September 2006
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No.06/06 / September 2006 |
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Welcome to the Invest in ME Newsletter
for September 2006.
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IN THIS ISSUE |
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ME As a Notifiable Illness at Schools |
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NHS Direct
Encyclopaedia |
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Saying NO to CBT and GET |
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ME Conference in JCP |
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ME Conference DVD for USA/Canada |
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Sophia's Story
Translation |
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ME Story -1 |
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The
ME-baY
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ME Story -2 |
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Other ME Groups/Contacts |
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ME Conference 2007 |
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ME Story - 3 Casey
Fero |
Despite the constant fight
to be heard pwme and their carers are resilient people. They have to be
considering the obstacles they need to pass. In this newsletter alone we show
the disappointing response from the UK Chief Medical Officer, we see the NHS
Direct web site is out of date with current knowledge about ME and there are
more stories of the injustices still being exposed relating to pwme.
Yet ME has been featured in the Journal of Clinical Pathology recently and
the ME Conference DVD is now circulating in North America, thanks to several
friends who are campaigning for justice there.
As we await the Gibson Inquiry report this Autumn we have a date set for the
ME Conference in 2007. This year's conference was an international event and we
hope next year's will be too. |
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IiME Campaign - ME As a Notifiable
Illness at Schools
Our letter to the Chief Medical Officer which was sent in July
received a reply.
One tends nowadays to expect the standard template reply from the minister at the Department of
Health who is given the
task of replying to people with ME. Usually full of the same old, tired and misinformed
clichés
the replies show not
only an apathy to the illness but also a disregard for human
suffering.
However, when the UK Chief Medical Officer repeats these same
statements we cannot leave that unchallenged.
In our reply we have requested a meeting at the earliest opportunity with the CMO.
We have not yet received any response to this request!
Our page on this campaign is available
here,
and we have added a reference to a paper on evidence of epidemics -
see
here.
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Thanks to Mike for sending us this letter he
wrote to the NHS to complain about the information on their NHS Direct website (here),
concerning CFS (the term they use to describe ME).
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"...
CBT is said to combat “thoughts and feelings
causing certain behaviour” and is also said to
be one of the most effective treatments for
CFS. Inference: CFS is a behavioural
(psychological) disorder.
This is completely
unacceptable because the World Health
Organization has classified CFS/ME as an
organic brain disease (ICD-10:G93.3), and a
condition cannot be classified under more than
one rubric in the ICD, since each rubric is
mutually exclusive.
The UK accepts the
WHO
Regulations
concerning nomenclature and is therefore obliged
to accept the ICD classification.
..." |
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See Mike's full letter to the NHS Direct Chief Executive
here. Mike points out that one can also complain to the Health
Commissioner and the Health Ombudsman. |
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CBT and GET
As the previous letter points out the use of Cognitive Behaviour Therapy and Graded
Exercise as treatments for a neurological illness may show the insidious side of
the politics and vested interests within healthcare in the UK, where a powerful psychiatric lobby has been able to
influence the discussion - and the funding - around Myalgic Encephalomyelitis. Some
people may feel compelled to accept either of these treatments for ME.
So here we are happy to publicise reasons why CBT and GET do not
need to be accepted. See
here. |
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The presentations from the ME Conference in May
2006 have been published in the Journal of Clinical Pathology -
see here.
This is a big boost for the real science and
research being carried out on ME and hopefully indicates that the tide is
turning once and for all for this illness. |
..and
ME Conference DVD in USA/Canada Format
......and we are now able to offer a version of the
DVD which is compatible with North American systems. The NTSC format of the ME
Conference 2006 DVD is available via this link -
click here. Price for the North American
version is £16, price including postage and packaging. |
Sophia's Story
Sophia's story has been translated into Danish
by Lajla Mark (see here).
We hope soon to have a translation in Finnish and we welcome publication of this
story in other languages. |
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ME Story - 1
Sophia's story isn't unique. Another
dark story provided by the Reading ME Group -
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"During
that time I was taken captive by psychiatrists
and taken to the Psychiatric Unit (at the)
Hospital. For six months I was subjected to
severe and terrible psychological abuses in what
I term their `interrogation chambers'. I
was subjected to a regime of the threat of
physical torture, bullying, intimidation, scorn,
derision, lies, deception, malice, and above all
hatred. The stress and emotional torment induced
in my mind was extreme beyond description. At
the end of their `treatment' the
psychiatrists claimed to have done wonders for
me, and to have transformed me into a wonderful
whole new person who'd progressed greatly in
mental health and well-being. But the truth was
that the psychological damage inflicted into my
vulnerable mind was colossal, and has so far
lasted the rest of my lifetime." |
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Thanks to Jonathan for another shocking story. Read more of Jonathan's
story
here. |
The
ME-baY
We have now set up the ME-bay which will allow
people from all over the world to fund work by Invest in ME.
The ME-bay is simple - you can sell your items via
E-bay and elect to donate a part of the profit to invest in ME. Invest in ME has
no salaried staff, and any donations we receive go toward our efforts to promote
and fundraise for biomedical research into ME.
Read more
here. |
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ME Story - 2 Temporomandibular Joint Dysfunction
In case you haven't
heard of TMJ before we thought to add this story to the newsletter this month.
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"You know, my health downturn actually started with
TMJ.
It gets attributed to teeth grinding and stress,
but in my case it was a sports accident - it
happened when I was skiing." |
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Thanks to Mary for submitting this. Read more of Mary's story
here. |
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This month we feature Norway - and the
Norwegian MEA. Run by Ellen Piro the Norwegian MEA has been very
active in the current vaccines scandal which is being discussed in
Norway. Just a brief introduction to the Norwegian MEA as Ellen has
been enormously busy in a national debate surrounding vaccines and
their own NICE policy making. For more about Norway's MEA -
see here.
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The date for the ME Conference 2007 in London has been set for 2-3rd
May 2007. We hope to kick off ME Awareness month by again showing
the status of ME and then publicising other events which will be
planned for May all over the UK and across the world.
Next year we are hoping to extend the conference over two days with
the first day mainly for people with ME and support groups - and the
second day for medics. Delegates will be able to choose to participate for one
or both days and we hope to be able to welcome delegates from
abroad. More details will be available in our next newsletter. A
separate web page is set up here as well as a new mailbox -
meconference@investinme.org.
We welcome the chance to work with ME groups around the UK, and
abroad, who are interested in furthering the recognition of ME as a
serious health issue and who would like to be involved in the
Conference.
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One of the earliest stories of ME which was put on our site in 2005,
shortly after IiME started, was that of Casey Fero (see
here). Casey's parents, Pat and Bruce, have continued their
campaigning for ME and here we have been given permission to publish
extracts from Pat's journal. We also have a message from Pat
concerning the Casey Fero Memorial Fund – Blood & Tissue Bank.
Read more here.
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As we publish this newsletter there is a patent filed for a possible
diagnostic test and treatment produced by Doctors John Gow and
Abhjit Chaudhuri. The description includes the following -
"...they believe CFS/ME to be an acquired
condition where there is a shift in the functional systems of a
select number of genes regulating specific biological functions (e.g. infection and immunity, cell membrane function and cell cycle)..."
See the full description at
http://tinyurl.com/gooqd
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