Campaign - ME As a Notifiable Illness
Opportunity for Progress
Nightingale ME Definition
ME Awareness Month
ME Guest Group
Our apologies for the delay in
distribution of our newsletter. The beginning of the year has
been quite busy with meetings in London and the conference
preparations and February has turned into March before we were
ready with our February newsletter.
This is an update for all our friends to
let you know how much we at Invest In ME appreciate your
support. We realise that to maximise our effectiveness we need
to keep you in the loop as to what we are doing and what we need
to do together.
This last year has been incredibly busy
and often, given that we are all either sufferers or carers as
well as “IiMErs“, we very rarely find the time to reflect on
what we have done.
Since the Conference last year we have
actively participated in the Gibson Inquiry GSRME and have
attended follow up meetings since. We are determined that we are
going to capitalise on the positive parts of the report which,
although by no means perfect, did agree with many of the
important points we wanted to highlight.
Since the beginning of the year we have
had meetings with the Deputy Chief Medical Officer and with Dr.
Gibson, Dr. Hyde and Professor Hooper, which has led to a lot
more work which should eventually lead to a very exciting
development (more details below).
This year’s Conference has attracted
speakers from all over the world and once again we have had
doctors, scientists and researchers asking us whether they could
come and speak. We have a respectable number of delegates
attending for both days but we really need to get the message to
more professionals. If you can help in any way, for example by
distributing flyers to local doctors or consultants or by
mentioning the conference to your local support groups that
would be much appreciated. If you would like a flyer to print
please contact us at
firstname.lastname@example.org; leaflets can also be downloaded from
If anyone has any ideas on ways that we
can get our message across, or that could help with fundraising
for biomedical research, then
contact us. We’re sorry that, because of our IiME and
personal commitments, we haven’t been able to keep in touch with
everyone on a personal level as much as we would like to, but we
would love to hear from you.
We hope that you and those that you care for are as well as
All at IiME
The contents of the newsletter
have also changed during preparation in February. News that
Professor Colin Blakemore is not going to continue as Chief
Executive of the Medical Research Council altered our planned
feature on the MRC. Having received a personal reply from
Professor Blakemore to our request for a meeting we felt it
warranted more campaigning to try to get the MRC to be more
accountable and transparent regarding its policies and
In the wake of
the Gibson Inquiry the organisations and institutions in the UK who
are responsible for governance and strategy of healthcare must
re-assess their policies with regard to ME.
NICE – the
appalling Draft Guidelines show a breakdown in any scientific
approach to treating ME/CFS.
DoH – template
after template produced in response to pwme’s questions on
CMO – no
result being effected from the CMO’s 2002 working group.
MRC – no result
effected from the 2003 research advisory group.
Here are comments from the MRC -
“A glance at the early records of
medical research shows that organisations throughout the world
frequently tended to overlook the relationship between research
findings and the implementation of health policies.
Transformation of the MRC has
been described as "an integral part of the national
transformation of our society".
The focus of all aspects of
research involves human beings, and research is thus informed
and guided by a culture of human rights, a vital component of
the strategy of transformation.
Simply expressed, these have been
described as the basic components of research, always bearing in
mind the needs of the greatest number .
1 Ask the question: 'How may we
improve, or how eradicate?'
Gather information to determine whether the question is a
relevant one and to discover what is already known about the
a plan of research to provide as many answers as can be
4. Do the research.
5. Analyse the results and
6. Make the results useable as
soon as possible.
Dynamically led, aware of both its
importance and its accountability to the people , the MRC
faces the future with confidence, and in the keen anticipation
of meeting and overcoming the challenges that will confront it.“
Fine words - unfortunately these quotes come from the Medical
Research Council of South Africa! Perhaps something here for the
new management at the UK MRC - and something also for NICE to
consider in the coming months. We hope that the replacement for
Professor Blakemore will take responsibility for altering the
myopic and failed approach of the MRC in relation to ME.
IiME Campaign - CMO
and ME As a Notifiable Illness
IiME finally visited the CMO's office in Whitehall in
January. Deputy Chief Medical officer Bill Kirkup hosted a
representation from IiME along with Professor Malcolm Hooper, who
travelled down to London for the meeting. A summary is on our ME As A
Notifiable Illness page
here). Although politely listening we aren't sure whether the
CMO's office has really heard what we have been saying. Dr. Kirkup
followed up with this -
“On reflection, it seems to me that the
significant division of opinion that you identified between the
biomedical and the psychological aspects of ME is central to the
frustration that exists concerning research and treatment of this
condition. In many clinical fields, for example cancer services,
these approaches are regarded as complementary aspects of a holistic
model – without, clearly, this in any way being seen as a commentary
on the underlying nature of the condition. Of course, I am aware
that the frustration exists on both sides of the divide that you
identified. However, I can’t help but feel that more progress would
be likely if all parties did not apparently see it as such a
pronounced and consequential a dichotomy.“
That would be an interesting proposal to make to the
psychiatric lobby who have been dominating the decisions on funding of
research into ME at the UK Medical Research Council for so long.
Dr Kirkup has been invited to come to the conference to
represent Sir Liam Donaldson who has declined the invitation.
The Gibson Inquiry
The Gibson Inquiry
provides an opportunity for us to make progress and we feel we need to
support the good recommendations made by the Inquiry. Although not
perfect and with calls for sections to be rewritten it still provides a
useful mechanism for attracting publicity and thus getting the essential
elements of progress for ME - acceptance of correct guidelines, more
education about the true features of this illness and guaranteed funding
for biomedical research into ME.
The inquiry is already spawning new opportunities and
Dr. Gibson will be at the May conference to provide an update.
Gibson Inquiry Meeting
Invest in ME attended the recent meeting of the
Group for Scientific Research into ME (GSRME) aka the Gibson inquiry. A
summary of the meeting is available
EDM for ME
Plans are afoot for an EDM to be created by Dr. Ian
Gibson's office. This would call on the government to support funding
for biomedical research into ME.
IiME will be adjusting our
and My MP campaign and hope to be able to support this EDM when it
is ready and when the contents are known. More details soon.
Meeting with Dr.
Ian Gibson and Dr. Byron Hyde
Some benefits from the Gibson Inquiry are evident
already. We describe two in the following paragraphs.
On Tuesday 6th March Invest in ME were pleased to
facilitate a meeting between Dr. Ian Gibson, Dr. Byron Hyde and
Professor Malcolm Hooper, as well as two respected journalists, in
We hope that this will help in furthering public
understanding of the issues raised by Dr. Gibson's report and will lead
to tangible benefits for those affected by ME. We await one or more
media pieces arising from the meeting and hope that parts of the media
are now even better informed about ME.
An Opportunity for
Dr. Hyde is perhaps the only physician who has been doing a total
technological physical body assessment on ME and CFS patients. This has
revealed an incredible amount of information on the differences between
ME and CFS. Without extensive examination Dr. Hyde feels pwme will
never know why they are ill and one will never get to the bottom of this
group of illnesses.
Employing the Nightingale M.E. Definition (see article below), some ME
patients can be treated and be significantly improved and possibly be
able to return to school or work.
The Gibson Inquiry has now led directly to a resolution
to prepare a research proposal.
The proposal is to be prepared by Dr. Hyde, Professor
Hooper and others and will involve other researchers with an aim to
provide two UK centres for full body analysis of people with ME. This
will involve full medical examinations being performed on people with ME
using relevant equipment and techniques with the results being used to
provide diagnostic evidence and techniques and further research
information. The project would examine patients with myalgic
encephalomyelitis and these centres would be true centres of clinical
excellence. The project would
not use any of the psychiatric units already set up in the UK but would
be hospital/university based and would take in referrals from UK
physicians. The project would involve severely affected people
with ME also.
Such a proposal will not be easy to prepare; it will require
consultation with many UK experts in the field; agreement of the
University Hospitals to be involved and it will require defined access
to highly technological tools so that patients, both adults and children
can be examined within a week. Finally such a research will require a
careful cost analysis, controls in some cases, and acceptance by the
appropriate health committees. All this will take time.
Invest in ME are working with Dr. Hyde and Professor
Hooper and facilitating and helping with this and we hope that the
eventual proposal will lead to a significant step forward in the funding
of ME, the treatment of ME and the future for people with ME and their
This approach for making such a proposal has been
evolving since the last IiME conference in 2006 and we will ask for
support and participation from all ME support groups around the country
The steps involve not just the development of the
research proposal but also raising of sufficient funds in order to set
up these UK centres. It already has the amazing dedication of Dr. Hyde
and Professor Hooper, individuals who have not flinched in serving and
helping the ME community. As Dr. Hyde points out -
"I believe that it is well
worth the effort if we can even return any M.E. patients to health
and productivity and to prevent future M.E. illness in children and
adults.....The UK will also potentially provide a spring board for
European research clinics to set up similar research facilities"
"It has been a long battle but
in reality, it has been Dr Ian Gibson who has opened the door to
something positive happening for the chronically disabled M.E.
children and adults in the UK."
Invest in ME are completely committed to this project.
We believe this is an exciting opportunity which we must grasp and we
will be doing whatever we have to do to try to make this opportunity a
Dr. Hyde and Professor Hooper will be able to elaborate
more at the Invest in ME ME/CFS Conference in London on 1st May.
Definition of Myalgic Encephalomyelitis
Dr. Byron Hyde has produced a new Nightingale Definition
of ME for the Gibson Inquiry and for the Invest in ME ME/CFS Conference
in London in May.
This can viewed
Originally meant to be publicised in February we
nevertheless still wish to mention the petition to the Prime Minister
started by Konstanze Allsopp. Anyone registered in the UK or UK citizens
living abroad can sign-up and the petition will be delivered to the
Prime Minister. The deadline is 28th January 2008. Judging by the recent
Pay-As-You-Drive petition, which received a million votes and managed to
make it to the news desks across the country, it requires a great many
more votes to gain the necessary publicity it deserves. It will be a
difficult task (at the time of distribution this had just over 3660
signatures) so please get all friends, relatives and colleagues (and
their friends, colleagues and relatives) to help this on by signing up.
The petition is available
and from Spain...
We have this story to show that the campaign for correct
treatment and funding toward ME is not confined to UK or USA. Clara
Valverde has sent us this report of events in Spain -
"Dear friends and colleagues far and near,
Yesterday, the Catalan Parliament accepted the Popular
Legislative Initiative on Chronic Fatigue Syndrome/ME and
Fibromialgia (FM), presented by representatives from 80% of
the people with CFS/ME or FM who are in associations in
This acceptance is the first step towards a world-first: a
law that would ensure proper services for people with CFS/ME
and FM and a fair treatment by medical inspectors.
Here is the news item in the Catalan Parliament's home
No one thought that a group of ill people like us, in a not
so user-friendly country would be able to pull this off. So
we are all very happy and it is a big boost for the CFS/ME
and FM community here.
Now that it has been accepted, the signature gathering can
begin. We need 50,000 signatures and we have a team of 150
signature- collection coordinators ("fedetarios") ready to
roll. Once the signatures are gathered, the law will be
discussed in parliament and voted. This will probably take
place in the fall.
Up to now, it has been a lot of work for us sick folks:
writing the law and the document to justify each article of
the law (thank you to all of you who sent me the necessary
bibliography!), working with all the associations to create
unity and the much needed empowerment, meeting with all
political groups and sub groups (we have the support of all
the political parties, except, of course, the party that
runs the Health Ministry), campaigning to recruit signature
coordinators, meetings with unions, women's groups others.
It has not been easy as we are presenting a proposed law
that puts totally into question the government's plan to
keep CFS/ME and FM solely in Primary Health Care (where most
doctors do not believe these illnesses exist or do not want
to work with them and are not allowed to do any relevant
tests), while our law, amongst other things, demands CFS-FM
units. So we have had (and continue) to deal with pressures,
intimidations, etc, from government and government-related
organizations. We are also having to deal with the two
foundations (one run by the government party, the other run
by businessmen) who, up to now, had managed to control and
manipulate the CFS and FM associations in Catalonia and
Encouraging the associations to be independent and to create
unity has been hard but the most rewarding work.
The documents (the law, the justification document and
other documents) are available in Catalan and some in
Spanish. If anyone is interested in receiving them, let us
for the Promoting Commission of the CFS/ME-FM Popular
Legislative Initiative, Catalonia, Spain
We hope to be able to welcome Clara to the ME/CFS conference in May
where she may be able to give an update.
From a friend of IiME
Thanks to Gill for this,
which we include not for the compliment, but for the hopes expressed
which we are sure are shared by most -
"We're so aware of how the
years are passing since our son and daughter were diagnosed
with ME and how cruel it is for all the children with ME
that they have missed out on their childhood as well as
suffering enormous pain. We live for the day that someone
like Jonathan Kerr will say that there is something that can
be done to help, if not cure, all those who suffer from
these terrible illnesses
I would like to thank everyone at Invest in ME for all your
hard work in organising the Conference for us all. I fully
appreciate just how much it takes to do something like this,
especially as you are parents of children with ME and
carers, it must be a huge amount of work and time that you
all put in to it. On behalf of all the ME sufferers and
carers who are going, could I say a big thank you to you
MRC - in Need
of an Overhaul
Professor Blakemore's attitude and track record regarding ME leaves a
lot to be desired and there is a bigger problem than just a failure to
engage. A more systemic failure exists in the MRC where an illness
affecting one in forty of the population, an illness which is recognised
as the leading cause of long term absence from school, an illness which
some research indicates to have been responsible for some epidemics,
where such an illness is forced to be deprived of any sensible,
organised, scientific research into its underlying causes due to denial
of funding and rejection of high quality research proposals.
In IiME's response to Gibson inquiry report we stated that we would
have liked the Inquiry to make one further recommendation -
the MRC's peer reviewing function be overhauled.
If biomedical research funding is being denied for a
neurological illness, yet funding is given for psychiatric
research for the same illness, then the MRC peer review
system is not working.
We also pondered whether this might
best be accomplished by investigating the way the MRC is managed and
operates. If we can discuss NICE being taken to judicial review if they
insist on going ahead with their proposed guidelines on CFS/ME, without
major rewrites and further analysis, then we have to ask what similar
review needs to be made of the MRC?
it is in need of a review to see the bias present. As Douglas Fraser has
pointed out -
During the UK Medical
Research Council’s Public Consultation period for ME/ CFS in
2002-2003, and while the Public Health Research Unit (PRHU)’s
Report on that Consultation was being suppressed by the MRC, the
following individuals, amongst others being criticised within
the PHRU document, were appointed to MRC Boards - ‘acting as a
core body of scientific advisors, assessing applications to
Chalder HSPHRB Representative,
Department of Psychological Medicine Institute of
Cleare NMHB Representative,
Department of Psychological Medicine Institute of
A David NMHB Representative, Department
of Psychological Medicine
Institute of Psychiatry London
A E Farmer Ordinary Member, Social,
Genetic & Developmental
Psychiatry Institute of Psychiatry London
Dr J R
Geddes NMHB Representative,
Department of Psychiatry University of Oxford
Dr S M
Lawrie NMHB Representative,
Department of Psychiatry University of Edinburgh
Dr M C Sharpe Ordinary Member,
Department of Psychological Medicine University of Edinburgh
Dr T Wykes Ordinary Member,
Psychology Institute of
PD White, Department of
Psychological Medicine at St Bartholomew's London
R P Bentall, the School of
Psychological Sciences at the University of
P Cowen, the
Psychopharmacology Research Unit Warneford
Hospital in Oxford.
(Professors K Bhui of
Barts, R Bentall,
S Wessely and F Creed have all been MRC Board
Members in the recent past).
The bias within the MRC toward psychiatric approaches to
'managing' ME is shocking in its arrogance.
trading“ is a criminal offence in Finance incurring
unlimited fines and custodial sentencing, and it is surely
time and even more important to apply the same or similar
regulations and penalties for its equivalent in the field of
Medicine and Public Health.
For our planned
research proposal to have a reasonable chance of success we believe the
way that the peer reviewing function of the MRC operates needs to be
investigated, probably overhauled and made much more transparent.
Professor Blakemore's departure from the MRC may aid this. His eventual
rejection of our invitation to attend, or speak at, the IiME ME/CFS
Conference in May was perhaps predictable. His continued refusal to
engage was disappointing.
we stated in January's newsletter the status of the MRC response to ME
has been poor. The MRC's funding of current psychiatric trials -
FINE trials - an investment of over £3
million - bears little resemblance to the recommendations from their
briefing document of 2003. As Dr. Hyde states -
protocol for the PACE trial is contrary to all that modern medicine
and physicians have learned since the 19th century physicians since
the time and theories of William Ostler."
The new MRC leadership will need to address the recommendations from
the Gibson Inquiry with substance rather than obfuscation -
"Biomedical applications in respect of ME/CFS known
to have been rejected
include those by Professor Jill Belch (herself a
Principal Fellow of the MRC) and Dr Vance Spence of Dundee,
as well as Dr Jonathan Kerr of St Georges, London.
It is clear that internationally there have been a
number of studies, which have identified clear areas for
further research. The MRC should commission British versions
of this research in order to advance possible treatments.."
source GSRME report
While IiME now are calling for the overhaul the MRC we also welcome
the fact that NICE are being investigated by the Health Select
Committee. This ought to be good news when one considers the
extremely poor Draft Guidelines for CFS/ME produced last year by
that organisation. The Health Committee is a Select Committee of the
House of Commons. It is appointed under Standing Order No.152 to
examine the expenditure, administration and policy of the Department
of Health and associated public bodies. The Committee has the power
to send for persons, papers and records. The Committee has decided
to undertake an inquiry into aspects of the work of the National
Institute for Health and Clinical Excellence. Areas of particular
decisions are increasingly being challenged;
confidence in the Institute is waning, and if so
evaluation process, and whether any particular
groups are disadvantaged by the process;
the speed of
the work of the Scottish Intercollegiate Guidelines
implementation of NICE guidance, both technology
appraisals and clinical guidelines (which guidance
is acted on, which is not and the reasons for this).
NICE have had to delay the planned publication
of their Guidelines on CFS/ME until August 2007. We cannot see them
being ready even by that time and feel they will have to rush
through publication or risk further embarrassment.
IiME have invited both Sir Michael Rawlins
(chairman of Nice) and Mr. Andrew Dillon (Chief Executive of NICE)
to our conference in May. Both have declined.
Invest in ME have submitted our evidence
directly to the Health Select Committee within the deadline of 23rd
March and our submission calls into question NICE’s approach and
performance in creation of these guidelines.
IiME recently sent around a conference update to many healthcare
staff around the country and beyond as well as to our regular
newsletter subscribers. In this we mentioned additions to the
conference line-up since our last newsletter.
Dr. Derek Pheby will be discussing epidemiology and his
establishment of a national ME Research Observatory using £500,000
of lottery funding.
also welcome Mr. Norman Lamb MP - Liberal Democrat Shadow Health
Secretary. Mr Lamb has previously asked questions in parliament for
Invest in ME (see
) and we welcome his involvement in the conference.
To advertise events occurring in ME Awareness Month why not try to
use GP surgeries' awareness and noticeboards? A flyer for ME
Awareness Month is available from the
ME Awareness Month page
- the theme -
Energising ME Awareness
We now have ME groups attending from UK, Ireland, Norway, Sweden,
Denmark, Germany, USA and maybe, as stated before, Spain. IiME would
still like see as many ME support groups as possible to be
represented at the conference - especially on ME Awareness & Support
Day (1st May) where we can work together to create a new spirit of
cooperation. Apart from the groups attending we also hope to welcome
additional celebrities on the conference days. Both Dr. Gibson and
Countess Mar will be at the conference and IiME have also
invited several MPs and are awaiting replies.
At the request of one of our friends and delegates to the conference
we have also set up a conference question form to allow delegates to
submit questions to speakers and the panels prior to the conference
Use the conference
links below to keep up to date with the latest information on the
For last year's conference we filmed the event and produced a
). The DVD was initially funded by IiME
trustees. For this year's conference we wished to improve on
last year's event and scale it up to allow an ME Awareness &
Support day with a greater variety of speakers. The costs for
the event are borne by the trustees again and we had not thought
it possible also to fund production of a film for this year. We
have been given a generous donation by IMET for the conference
and, since our announcement about not filming the 2007
conference was made, several friends of IiME have also made
donations. We'd like to thank all of those who donated (typical
of their character they do not wish to be named) and for those
other offers of help and support which we received. This means
so much to us. We can't make any promise that a DVD will be
produced but we are looking into it.
Sponsor a Medic
Thanks to all the ME
support groups who have tried to get more interest from healthcare
professionals for the ME/CFS Conference in May. We are happy to report
that we have received many enquiries and also actual bookings from
doctors who are linking up with a local ME Support group and attending
the conference at a reduced rate.
The scheme will still be
running up until the conference days so please help us get as many GPs,
paediatricians and other healthcare professionals to the conference in
The CPD accreditation has
been given to the conference (a maximum 12 points for the two days - 6
points apiece) and this can be added to the personal education plan for
any healthcare professional.
More details are
Guest Speaker - HHV6
January came news from
Stanford University of Medicine, USA, that a
"preliminary study suggested there may be hope in the offing for
some sufferers of chronic fatigue syndrome
with a new therapy being tested by researchers at the Stanford
University School of Medicine." Jose Montoya, MD, associate
professor of medicine (infectious diseases), and postdoctoral
scholar Andreas Kogelnik, MD, PhD, have used the drug valganciclovir
- an antiviral often used in treating diseases caused by human
herpes viruses - to treat a small number of CFS patients.
researchers treated 25 patients during the last three years, 21 of
whom responded with significant improvement that was sustained even
after going off the medication at the end of the treatment regimen,
which usually lasts six months. The first patient has now been off
the drug for almost three years and has had no relapses. A paper
describing the first dozen patients Montoya and Kogelnik treated
with the drug was published in the December issue of Journal of
The HHV-6 Foundation was
very much involved with Stanford on this project and helped
fund a significant portion of the preparatory work for the clinical
trial. Kristin Loomis, executive
director of the HHV-6 Foundation, has said "This could
be a solution for a subset of patients, but that subset could be
quite large. These viruses have been suspected in CFS for decades,
but researchers couldn't prove it because they are so difficult to
detect in the blood. If Montoya's results are confirmed, he will
have made a real breakthrough."
Click here for more information on the HHV-6 Foundation.
We include this month a story as told
by a parent on a young person with ME -
ME Guest Groups
We are happy to publicise other groups' work where
it helps. This month we have news from Louise Whitbread of the West
Berkshire ME Group which provides the only support group in West
Berkshire for those with ME.
here for more information.
Dr. John Greensmith is always looking for ME stories appearing in
the press. Education about ME needs to be carried out on every level
and at every opportunity to remove established myths and
old-fashioned perceptions about the illness. John has a contact (at
info(at)mefreeforall.org) for any stories appearing in the press
if you wish to share.
Send us a note as well so we can keep our
Irish ME/CFS Support Group
The Irish ME/CFS Support Group has recently
donated 22,000 Euro to ME Research UK and 22,000 Euro to the CFS
Research Foundation (CFSRF) from their research fund.
means that the group have now given 50,000 Euro to ME Research UK
and 50,000 Euro to the CFS Research Foundation in total [equivalent
to approximately £67,697 or US$132,834.75].
finally BLOGS and ME
Blogs are now a daily part of many people's lives. There are some
useful and interesting topics and experiences on some blogs. So we
thought we would devote a page to ME blogs (i.e. a Blog set up by/for a
pwme or carer/parent). We started off here with a couple -simply because
we saw them link to IiME's website - and this may be as much a surprise
to the owners as it was for us to see our link. Blogs and ME can be
Blogs of ME Sufferers and Carers.
Send us details of your blog – we cannot take any responsibility for
the content of the blogs but are willing to keep this list updated if it
helps share pwme’s experiences and thoughts and improve the perception
of ME around the world.
The more we work together the better our chances for making real
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