APPG 2011


APPG for ME AGM 25th October 2011

An APPG for ME AGM is to be held on 25th October 2011.

Unfortunately, due to some personal issues, IiME trustees were not able to participate in person at this meeting.

Instead we have sent the following to the chair of the APPG, Mrs Annette Brooke MP.

APPG for ME – Meeting 25th October 2011

Annette Brooke MP                                                                                                            25 October 2011


Dear Annette,

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 from AfME.

We would like to submit the point and information below for input into the APPG meeting on 25th October.

We 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 families,

Best Wishes,

Kathleen McCall

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

4. Welfare Reform Update

5. Research Update

6. NHS Services Update

7 Date of next meeting



4. 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 decided?

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.

Similarly the document provided by the APPG secretariat today includes these comments

“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.

These 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 claims.

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. 

ME Biobank

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 questionable.


No comment.



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 criteria”) [8]. 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 paper.


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 times.


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 year.


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 neurological illness?

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 - click here.


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 them.

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  

….taking Political action that will bring about effective and properly funded NHS specialist M.E. services. These include:


Anti-discrimination – 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 research


Economic – 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

Dr Chantal 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 below).

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 (2011)
(presented at the Invest in ME conference in London in May), and after
extensive media coverage since, Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health made the following statement

"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 health care
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 years.

2/          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. 

3/          Press Complaints Commission

As 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 -


We 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

click here

Appendix 2 – REPLY from  InnovAiT

click here




Back to APPG page  

Last update: 29 October 2011