APPG for ME – Meeting 25th October 2011
Annette Brooke MP 25 October 2011
Thank you for inviting Invest in ME to the APPG on 25 October.
Unfortunately we have to send our apologies due to continuous
illnesses in the families of two of the trustees.
This is our second
submission for this APPG meeting – we only received the agenda
and briefing documents earlier today so we have added to our
original submission after studying the documents emailed to us
would like to submit the point and information below for input
into the APPG meeting on 25th October.
would appreciate if the above points could be mentioned and
minuted at the APPG meeting.
Thank you again for inviting Invest in ME to be part of the APPG
for ME and for your support of people with ME and their
Chairman Invest in ME
(These were the briefing papers and agenda which were
distributed to IiME on the afternoon of the 24th October)
APPG AGENDA Tuesday 25 October
1. Welcome by the Chairman
2. Minutes of the last meeting
3. Matters arising
7 Date of next meeting
Welfare Reform Update
Invest in ME would
like to ask the Minister for Employment – Who trains the medical
assessors on ME and how is the content of those training modules
The experience which
our supporters have of the current ESA is not good as the
qualifying questions are rather simplistic and inappropriate
when it comes to ME.
document provided by the APPG secretariat today includes these
“All Atos Health Care Professionals (HCPs) are now required to
read an evidence based protocol on ME/CFS as part of their
induction training and are required to engage in a programme of
continuing medical education which includes modules on ME/CFS.
In addition, all HCPs have been issued with a distance learning
module on variability in order to reinforce their ability to
assess variable conditions.”
We would like to ask
Who is providing this education on ME/CFS?
The statement that
for ESA claimants “a
significant proportion are having success if they go to appeal”
somewhat misses the point as the stress and efforts involved in
appeals for ME patients may severely affect their health.
appeals could be avoided if the people evaluating claims
understood more of the real effects of ME – thus saving risk to
the health of the claimant and saving the government money in
unnecessary extra work by those performing evaluations of
We believe training
and education of healthcare staff to be core essentials which
the government has to ensure are present when examinations or
evaluations of people with ME are carried out. However, this
education must be based on the biomedical model of ME –
something the government and WHO implicitly accept due to their
recognition of the disease being a physical illness.
5. Research Update
We have these comments to make on the Research Update document
provided by MEA.
How are patients selected to provide samples for this proposed
biobank diagnosed? GPs are not good at diagnosing ME and ME is
not even in their curriculum. Diagnosis by GPs will be open to
error therefore making samples and research using them to be
The recent research was first presented at the Invest in ME
conference in London in May 2011.
The MEA documents states “The phase 2 trial involved 30
(Fukuda criteria) ME/CFS patients.”
This is not fully correct.
As mentioned at the conference and in the PloS One paper the
patients taking part in the Rituximab Trial were also assessed
according to the Canadian Criteria and 28/30 patients fulfilled
these criteria also.
"Retrospectively, we checked the 30 patients according to the
Clinical Working Case Definition (“Canadian
. Two patients in
the placebo group did not fulfil these criteria, and it could
therefore be argued that they might not have CFS. One of
these had almost no pain, and one had only slight cognitive
symptoms and also reported marked mood disturbances. The latter
patient reported major improvement after intervention with
saline and was recorded as one of the two responders in the
Placebo group. Generally, the patients reported a high level of
disease-related symptoms prior to entering the study, with major
impact on daily life and ability to participate in family and
social activities. Most of the patients had a long CFS disease
duration, also with a stable or worsening clinical course the
last year before study entry."
This is an important omission from the MEA research briefing
Another point about the research - this study has received
very little media interest in the UK compared to the
extensive coverage in Norway and compared to the UK coverage
whenever a negative XMRV paper has been published in recent
It also needs to be noted that the Norwegian Directorate for
Health has publicly apologised for the treatment of ME patients
in Norway. This was publicised by the European ME Alliance -
It should be noted that the retroviral studies are still ongoing
with Dr Lipkin in the USA expected to report on his studies next
6. NHS Services Update
From the Information Standards board:
"NHS Information is used primarily to record the care provided,
to support that care, and to monitor that care. It is also used
as the basis of evaluation and research on different aspects of
care to populations, for the management of resources and to
provide statistical information to support the measurement of
health status, performance monitoring, and the achievement of
national performance targets."
In hospitals all in-patient episodes and attendances that
contain diagnoses must be recorded to the mandated version of
ICD 10. ME is in the category of neurological illnesses.
Why is it so then that ME patients are rarely seen by
neurologists and the current services for ME patients are mainly
run by OTs and offer nothing but CBT and GET.
How does the NHS information collection reflect on ME as a
It is vital to establish a centre(s) of excellence that follow
the biomedical model of ME such as the one proposed by Invest in
ME in Norwich to get any meaningful data to support future needs
and services for ME patients.
Perhaps the APPG could issue a statement supporting the Invest
in ME proposal for an examination and research facility based in
the Norwich Research Park which could form the UK’s Centre of
Excellence for ME -
The briefing paper from AfME on NHS services for ME refers to a
survey which AfME performed. It states that -
A survey by Action for M.E. earlier this year drew 977
responses and showed that the majority of people with M.E.
(84.9%) wanted the specialist M.E. services in the NHS to be
protected. 91.9% of respondents wanted an increase in
services across the UK
However, it would be dangerous to read this as a true
representation of the views of people with ME. The membership of
AfME is open to question in that presumably no analysis of
health is made if a person subscribes to AfME, and therefore
AfME’s membership may not be people with ME but may also include
those with fatigue. The survey should perhaps state that xx% of
AfME members wanted the specialist services…..
From our experience we hear that ME patients do not go to the
existing fatigue clinics as there is nothing of value there for
What we believe is vital is that biomedical consultants are
appointed to head services providing treatment to people with ME
and that these consultants are aware of the latest biomedical
research and potential treatments available.
Invest in ME would like to underline and support the last two
points in the document
– This patient group has been systematically discriminated
against for many years. There is no other chronic condition that
has such an adverse impact on the health of so many people yet
has so little funding devoted to medical care or scientific
….taking Political action that will bring about effective and
properly funded NHS specialist M.E. services. These include:
– Early diagnosis and intervention – even with the limitations
of currently available therapies – mitigates the impact of the
illness and saves money over the long term. It does not make
sense to save a penny on M.E. specialist healthcare today in
order to spend a pound more on social care and welfare support
in the future.
We absolutely agree with these points.
8. Any other business
1/ GP curriculum
Simon, Executive Editor, InnovAiT informed Invest in ME that ME
is not mentioned in the GP curriculum at all.
Last year we were
informed by the General Medical Council that medical curricula
were the responsibility of individual medical schools (our
correspondence and InnovAiT’s reply is in Appendices 1 and 2
InnovAiT is a
journal published monthly as a benefit of AiT membership of the
Royal College of General Practitioners. They ran an article
entitled ‘Chronic Fatigue Syndrome’ on 8 July 2011 which stated
that GPs are well placed to make a diagnosis and give advice on
management strategies. CBT and GET were said to be beneficial.
We do not see how
these statements are compatible.
In our opinion, GP
Training ought to be a subject to be discussed at a forthcoming
APPG meeting with relevant ministers and organisations present.
In contrast the
Norwegian Directorate of Health has recently apologised for
the way in which ME patients in Norway have been treated. This
has been along much the same guidelines as in the UK.
The apology follows the publication of the ground-breaking
research from Haukeland
University in Bergen
After the publication of the Rituximab study by Fluge et al
(presented at the Invest in ME conference in London in May), and
extensive media coverage since, Bjørn Guldvog, Deputy Director
General of the Norwegian Directorate of Health made the
"I think that we have
not cared for people with ME to a great enough extent.
I think it is correct to say that we have not established proper
services for these people, and I regret that."
Such a public
apology from a governmental health agency has never occurred
It is in contrast to
the equivocal position of UK government policies of recent
Voices from the Shadows Film Screening – British Library
Invest in ME are
hosting two film screenings (premieres in UK) of the film Voices
from the Shadows – in Norwich and in London. The London
screening is at the British Library on the evening of Wednesday
7th December. We have invited members of the APPG
already. We would like to suggest that the APPG for ME might
consider holding a special session after the screening of the
film in order to discuss issues arising from the film.
We would also ask
the APPG for ME to publicise the film screening in parliament.
IiME have suggested already to the producers that this film
should be shown in all medical schools. We feel many MPs who
have constituents suffering from this disease could benefit from
attending the event and we have already invited MPs from the
APPG group as our guests.
you may know Invest in ME issued a 21 page complaint to the
Press Complaints Commission regarding 5 articles which appeared
in the press last summer – all of them denigrating people with
ME and simply reporting the views of Professor Simon Wessely.
Details are here -
would like to suggest that it might be appropriate for the head
of the Press Complaints Commission and one of the main newspaper
editors to attend an APPG meeting and explain why there is such
bias toward people with ME in the UK media.
Appendix 1- LETTER from IiME to InnovAiT
Appendix 2 – REPLY from InnovAiT