Invest in ME's September 2009 newsletter.
IN THIS ISSUE
H1N1 Flu Virus
IiME ME Information
Response to E-Petition to Prime Minister
Response to Letter to CMO
Finalised Terms of Reference
My Sister Sophia - Before ME
Fundraising for ME
H1N1 Influenza Virus
has responded to our request for advice for ME patients as to whether he considers people with ME to be more at risk
from the H1N1 strain of the flu virus,
and whether Tamiflu will be immediately available if requested.
His reply is
The CMO states that the ME "is not
known to increase the severity or duration of community
acquired infections" and he is "not aware of evidence that
ME leads to more severe and complicated influenza, and ME is
not a condition which leads to the inclusion of sufferers in
the population groups offered vaccination for seasonal
The CMO's web pages which describe the
"population groups" offered vaccination
Following advice from independent expert
committees including the Joint Committee for Vaccination and
Immunisation (JCVI), the following groups should be
prioritised for vaccination in the following order, once the
vaccine has been licensed:
i. individuals aged six months and up to 65
years in the current seasonal flu vaccine clinical
ii. all pregnant women, subject to licensing
conditions on trimesters
iii. household contacts of immunocompromised
iv. people aged 65 and over in the current
seasonal flu vaccine clinical at-risk groups
These groups were selected
because they are at highest risk of severe
know that the
Department of Health officially classes CFS/ME as "a chronic neurological condition”. The NHS
website includes chronic neurological diseases among high risk groups
needing preferential treatment - see the influenza immunisation programme 2009/10 in
Annex 5 under Clinical Risk groups is included Chronic
Neurological disease -
That qualifies ME as one of the high risk
The CMO states in his web page -
any vaccine for H1N1 would be given to "household contacts
yet he also states in his letter to Invest
in ME -
that ME " is not a condition
which leads to the inclusion of sufferers in the population
groups offered vaccination for seasonal influenza".
There is an obvious and dangerous
There is a great deal of research indicating
that patients are "immunocompromised" and, if the CMO had
come to any of our conferences, he could have been made
aware of that from the leading experts on ME. The role of
enteroviruses and herpes viruses in this illness has had
much peer-reviewed research of which the CMO ought to be
aware. These are known to persist in ME patients.
We have written back to the CMO [click
here] to determine
if he would like to revise his
position and his statements on this subject.
The DVD of the conference has now been distributed to almost
has reviewed the IiME conference in May - available on her web site -
For those in Australia or New Zealand
who wish to order the DVD we would like to mention that the
Alison Hunter Memorial Foundation has taken delivery of a number
of the DVDs and you may also order from there - see
Details on ordering the
DVD are here (click
here for details).
IiME ME Information Package
Invest in ME have been awarded a grant to supply ten
Hampshire libraries with an ME information package
consisting each conference DVD (2006 - 2008), a Lost Voices
book and the Canadian Guidelines.
We hope to add more such
packages for other libraries in the future.
We still have some copies
of the Journal of IiME Volume 3 Issue 1 available (the May
2009 conference version). If you would like a copy we are
offering them for £2 plus p&p. For those of you who feel a
copy of the Journal being sent to your GP or MP would be of
help to you and your situation then we are willing to send
the Journal directly to your GP/MP. As we don't have funds
to print more copies then this will be on a
E-Petition to Prime Minister
We are in the process of replying to the to the Prime Minister's
(read Department of Health's) reply to the e-petition (mentioned
in our June newsletter).
We suggested to the Prime Minister that a sizeable portion of the electorate
could be directly or indirectly affected by ME and the lack of progress due
to government policies. With a year to go before an election in the UK maybe
now is an opportune time to begin a page detailing the responses from the
different political parties -
the other main political party leaders to ascertain their views on the Prime
Minister's response and have documented the replies which we received from
David Cameron (Conservative) and Nick Clegg (Liberal Democrats). These
responses aren't adequate and we'll be requesting more precise details on
policy toward ME over the coming months.
You are welcome to send us any examples of replies from MPs on this subject
and we can publicise the responses in the run-up to the election.
Response from CMO to 12th May Appeal
Invest in ME
have been contacted by the Long Term Conditions team following our May 12th
appeal to the CMO to champion the cause of people with ME.
We are in
the process of setting up a meeting to discuss our view of what needs to be
done, what is missing and how we might achieve our objectives.
Plans to change the way the Disabled Living
Allowance is provided are on the way following a government Green paper. From
Steve Donnison (Benefits and Work Publishing Ltd) -
|A government green paper has
revealed proposals to stop paying 'disability benefits, for example,
attendance allowance' and hand the cash over to social services
Under the plan, current claimants would have their disability
benefits converted to a 'personal budget' administered by local
authorities and used to pay for services - not to spend as they
Once the green paper consultation period ends in 100 days time, if
an almighty row has not been raised, it is likely that both major
political parties will see the lack of outrage as a green light to
end both DLA and AA.
We’re looking for a minimum of 1,000 claimants, carers and support
workers to join our campaign to save these benefits from being
Find out how you can take part from this link:
We know that many people will take false comfort from the fact that,
unlike AA, DLA is not specifically named as being for the axe. But
if the government was planning only to abolish AA it is extremely
unlikely that they would refer constantly throughout the green paper
to 'disability benefits', a term which includes not just AA but also
Others will dismiss this as just another idle discussion document
and our concerns as scare mongering.
But it’s much more than that.
36 meetings have already been organised around the country for
people working in government and the caring professions to meet to
be told about the setting up of a new National Care Service which
would oversee the system. In addition, a stakeholders panel of more
than 50 voluntary sector organisations, trades unions and academics
has been established to offer advice to the government.
Some organisations and individuals, such as RNIB and welfare rights
worker Neil Bateman writing for Community Care magazine, have
already voiced their alarm.
But not every disability organisation is opposed to the proposals
and some even agree with them.
In a press release, Disability Alliance has welcomed the publication
of the green paper and said that it 'looks forward to working
alongside Government and all the other stakeholders in bringing
these plans into fruition'. They have even said that they agree that
there is a case for ‘integrating disability benefits such as
attendance allowance’ into the new system.
One thing everyone does seem to agree on is that huge cuts in public
spending will have to take place in the next few years as a result
of the credit crunch and global recession.
Political parties are desperately looking for the softest targets to
be the victims of these cuts. Dismissing the green paper's
proposals as hot air and not worth worrying about could be the
costliest mistake you ever make.
MRC Finalised Terms of Reference
The MRC finally published their terms of reference
for their proposed panel under Professor Stephen Holgate. Our thanks to Suzy
for passing this information on and for continuing to request information to be
provided by the MRC under the Freedom of Information act. The next MRC next
meeting will be in November
The terms of reference are of the generic
vagueness that hampers ME research.Two years have passed since this panel was
conceived and so far this is all that the MRC strategy amounts to.
The lack of urgency would be appalling if one
really believed that this is going to achieve anything. But haven't we been here
before? Going back to 2002 -
What happened to the clinical
trials to evaluate the merit "of
different treatments", "the use of imaging technology to determine whether
ME/CFS is linked to physical changes", "an examination of the possible role of
the central nervous, immune and hormonal systems"? Fine aims - needless to say
know what happened to the "psychological studies" - the vested interests within
the MRC who referee all proposals subsequently decided to fund the PACE and FINE
We do not believe
the MRC will ever treat ME seriously until they are embarrassed or forced into
doing so. The tardiness of the whole MRC approach to sensible scientific
research into ME leads us to believe the latest initiative is another ploy to
delay treating ME research seriously. It will prolong the discussion of ME
biomedical research under the guise of a a comprehensive strategy.
In two years the MRC
panel have got precisely nowhere. Contrast this with what the
Whittemore-Peterson Institute has achieved in those same two years and look at
the promise the WPI holds compared to the lacklustre and barren commitment from
The MRC declined
offers facilitated by Invest in ME to visit the WPI. We can
only thank the stars that we have the WPI's work which will make the MRC
"strategy" and their panel of experts redundant long before it ever produces
anything of real substance.
|What filled me with
resentment and embarrassment was that my father
and in turn many of his close friends and
colleagues were in positions in which they could
have propelled ME/CFS forward into main stream
medicine and greater acceptance. The way he
treated of me was merely an act upon one person
-- his denial that ME/CFS was real and his
refusal to help get understanding of the illness
and increased ME/CFS research into main stream
medicine was an act of medical irresponsibility
inflicted upon all people who have ME/CFS.
That is what I could never forgive him for.
Long time ME advocate, John Herd, wrote in our 2008
conference Journal of IiME [http://tinyurl.com/5bzzxx].
John has given us permission to repost his article (click
here) on Medical Entrenchment and ME/CFS - clearly
showing the dangers of biased and heavily entrenched views
on ME research.
My Sister Sophia - Before
Roisin Mirza, Sophia Mirza's sister, has created a You Tube
film of Sophia before she became ill from ME -
click Here. The film shows
something of Sophia when she was well and it will give people an
idea of what she was like.
Fund Raising for ME
With John Herd's last sentence in the article above in mind
["I beg people to give till it hurts, for ME/CFS hurts a lot
more"] we have set up a fundraising page to show
events occurring or which have occurred -
If you'd like to help
raise funds for Invest in ME then on 6th September Crystal
Igliakowski will be running the Adidas Women's 5k Challenge
Sunday 6th September 2009 on behalf of Invest in ME.
If you'd like to sponsor her, please go to her fundraising
Invest in ME have set up a
Biomedical Research Fund (announced in January) which we
hope to say more on over the next months.
And another reminder that
the Whittemore-Peterson Institute hold their annual
fundraising gala on 12th September.
The WPI are well worth supporting even if one can't attend
the actual event [http://www.investinme.org/helpus.htm#Donate-to-the-WPI].
President of the WPI, Annnette Whittemore's daughter
Andrea, has commented on
IiME's facebook -
|"Please buy a ticket to
I Hope You Dance 2009 or donate what you can. The event
benefits the Whittemore -Peterson Institute being built
at the University of Nevada Reno. It takes place
September 12,2009 at the Peppermill in Reno from
5:30-10:00 pm. Go to
www.wpinstitute.org for more
information! And please become a Friend of the
Whittemore Peterson Institute at Friends of the
Whittemore Peterson Institute facebook page.