Invest in ME - Forward ME Meetings

Invest in ME's Input to the Meetings of the Forward-ME Group - Organised by the Countess of Mar

Meeting 8th October 2008

IiME's input to the first meeting between representatives from ME charities and organisations - as organised by the Countess of Mar - 8th October 2008.

In preparation for this meeting participants were asked to provide comments on several points. IiME were unable to attend this meeting but sent in the document below. (IiME comments in blue)

What are the aims and objectives of your particular organisation?

Invest in ME is an independent UK charity campaigning for better education regarding ME/CFS and a national strategy of biomedical research into ME/CFS which will lead to correct diagnosis, valid treatment and cures for ME/CFS.

Our intention is to provide, where possible, free advice and information to people with ME/CFS, their families and also to healthcare organizations, physicians, researchers and the media.

We achieve this with our educational material and our annual biomedical research conferences.

Our main objectives are to facilitate development of a test which can properly diagnose ME/CFS and to facilitate or participate in finding treatments and cures for ME/CFS.

What have been the obstacles to progress (in getting ME patients better)?

To get ME patients better we feel we have to look at this logically.

The Name

Firstly, the name itself.

If we are using different names then it is difficult to agree on a consensus and difficult for patients, healthcare organizations and the media to be consistent when dealing with ME/CFS.

Without agreement on the name of the illness for which we are campaigning then it would be difficult to agree on anything else. For example the NICE definition of the illness (they use CFS/ME or CFS) with fatigue plus one symptom is bound to include almost anyone from depression to burnout to misdiagnosed, rare illnesses. This isn’t acceptable.

ME/CFS is as described in the WHO classification ICD-10 G93.3 and stands for myalgic encephalomyelitis. This name should be used as standard when referring to ME or ME/CFS.

We should standardise on this name and force a similar standardisation amongst healthcare organisations.

ME and ME/CFS are considered to be the same for the purposes of this document.

Diagnosis

If the definition of the illness is vague (if the name is not agreed upon, the symptoms therefore not agreed, the diagnostic criteria not standardized) then, of course, the diagnosis and the treatment will be liable to be incorrect.

Misdiagnosis is a major problem.

To enable correct diagnosis then a set of diagnostic guidelines needs to be in place to enable proper and correct identification. The lack of a common set of guidelines has allowed too much flawed research to be funded thus wasting valuable time and money. This has been a major obstacle in obtaining progress for people with ME/CFS and has allowed far too many cases of missed or misdiagnosis to occur.

Biomedical Research

The lack of funding for biomedical research is a clear impediment to progress on treating and curing people with ME/CFS.

Without this then erroneous perceptions of ME can continue and valuable funding can be lost to flawed research priorities, enabling those not interested in curing people with ME to continue to monopolise scarce funding.

NICE

None of the above issues have been helped by the recent NICE guidelines. That document at best will do nothing and at worse will perpetuate false views of the pathology and therefore treatment of people with ME/CFS.

Therefore to summarise the first point the following obstacles are already in place -

Lack of correct, standard terminology

Lack of proper or correct diagnosis

Lack of consistent clinical diagnostic criteria from being applied

Lack of funding for biomedical research

NICE

What are the solutions?

Clear usage of one name for this illness – ME/CFS (as defined by WHO ICD 10 G93.3) – myalgic encephalomyelitis. This clearly presents problems for other groups who may rely on the subscriptions from a broad range of members with varying conditions, not all of them having ME/CFS. However, this is one of the reasons for lack of progress on clearly identifying the illness and appropriate treatment(s).

Standardisation on one set of guidelines for diagnosis. Currently the Canadian guidelines are clearly the best for ME/CFS as they have been purposely written for ME/CFS and are already in use in many countries. Adoption by everyone of the CG will send a clear message to all of the correct way forward.

The promotion of these guidelines in healthcare organizations and government circles will provide benefits for patients and healthcare staff and help to avoid misdiagnosis.

We need to establish a strategy of funding for biomedical research into ME/CFS in the UK. Funding needs to be made available and a concerted campaign needs to continue to lobby for this.

There needs to be an emphasis on establishing biomedical clinics to treat people with ME/CFS and the removal of clinics offering purely psychological therapies.

How are the solutions to become actions?

All organisations need to recognise Myalgic encephalomyelitis as the name for ME/CFS and also use ME/CFS when referring to the illness.

The Canadian Guidelines need to be adopted by all ME organizations and the government, DoH, NHS, CMO and MRC). The CG need to be distributed to all healthcare professionals treating people with ME/CFS.

Some of the actions required to benefit people with ME/CFS and their families will be outside the control of support organizations. However, the above points would standardise the “ME landscape” and influence, we believe, policy making. Once these basics are in place then it will directly affect the outcomes in other areas (such as benefits issues and inappropriate treatments being forced on patients by insurance companies).

Any clinics treating people with ME/CFS need to adopt a biomedical approach to this illness.

The peer review system of the MRC needs to be challenged and made transparent so that biomedical research applications are seen to be given as much of a chance for funding as is currently provided to psychiatric research proposals.

The current NICE guidelines need to be rejected by the ME community.

Meeting 18th November 2008

The second meeting of the group took place on the 18th November 2008. IiME were not able to attend due to health/work reasons but sent in our comments regarding the proposed agenda.

We include here the document sent in to the group from IiME (IiME comments below in blue ) -

TUESDAY 18 NOVEMBER 2008 at 2.00pm in

THE TELEVISION INTERVIEW ROOM, HOUSE OF LORDS.

1. Apologies.

2. Minutes of the meeting held on 8 October 2008.

3. Matters arising.

4. Correspondence.

5. Constitution for Forward-ME.

i. Aims and objectives

Facilitate correct recognition of myalgic encephalomyelitis as an organic illness requiring biomedical research to treat and cure
Facilitate correct diagnosis of patients
Facilitate specialised biomedical centres for education/treatment/cures

ii. Membership

Membership should be allowed to all organisations which agree to the aims and objectives.

iii. Terminology

We must refer to the same name as is used in WHO ICD-10 G93.3 – ME/CFS Myalgic encephalomyelitis.

6. Beliefs about ME and CFS

NAME

It has been commented that the name is not important.

However, we believe we must establish which illness we are dealing with.

To illustrate the problems of ignoring the name then imagine participants of this meeting being asked to comment on the illness and each party using a different name for the illness – it would be somewhat absurd.

Chronic Fatigue is a symptom, not a disease or illness.

So we believe we need to be talking about ME/CFS (Myalgic Encephalomyelitis) and not chronic fatigue.

CFS

In the UK CFS refers to an illness defined by the Oxford definition (chronic fatigue) which is not the same as the US version of CFS which was originally created based upon an epidemic in Incline Village.

NICE

We believe that opposition to the current NICE guidelines must form part of the position of the group.

Reasons for rejection of NICE:

See - http://www.investinme.org/Documents/PDFdocuments/IiME%20Official%20Response%20Final%20to%20CG53%20Full%20Guidance.pdf

7. Joint activities

i. Action for lobbying for changes to be made to HMG’s proposed reforms to the welfare system.

The government views on disability are too simplistic and there needs to be greater understanding on how an illness like ME affects people.

The illness fluctuates and is unpredictable so it is difficult for people with ME to adhere to any targets and deadlines demanded by any employment situation.

The welfare reform puts undue stress on people with ME and patients’ fear of losing benefits affects their health.

People with ME are motivated and want to be productive but their healthcare needs are not met to allow them to regain their studies or employment.

Emphasis should be placed on regaining health rather than returning people to work.

ii. Approach to the APPG Inquiry into NHS services for people with ME.

We have published our views and concerns on the Terms of Reference for this proposed inquiry (a copy is attached [click here]).

With the judicial review of NICE we don’t believe this is a sensible proposition to begin whilst the NICE review is being undertaken.

iii. Research agenda.

Biomedical Research needs to be made into the following -

We need to treat the illness as having distinct subgroups and understand that ME/CFS is separate from the various fatigue states which have so benefited the psychiatric lobby and rewarded them with the near totality of available funding.
Research a diagnostic test to identify subgroups
Research into pathogenesis of ME
Clinical research on the severely affected.
Clinical trials on treatments available now such as antivirals.

8. Website.

9. Any other business.

10. Date of the next meeting.

Earliest would be in the new year.

Status 23rd March 2009

Following the NICE judicial review verdict (see here) Invest in ME have declared our position regarding the future of the Forward-ME group of charities and organisations.

The comments below were about to be sent to the Countess Mar and the other group members at the time that one of the members, the 25% Group, decided to withdraw from Forward-ME. In the light of this news IiME adjusted its email to Countess Mar to give the following statement.

Regarding the (next) meeting and topics we feel we need to speak honestly so there are no misconceptions.

Regarding the point about lack of willingness of researchers to study ME - we feel that the problem at the moment is not lack of researchers or their willingness to perform research because even the existing world-class researchers who are willing to study ME in the UK do not get MRC funding - whatever they do.

The CMO, DoH and the MRC are invited to hear the latest biomedical research but all show absolutely no interest in attending our conference. The only researchers who get funding are those who are willing to incorporate the psychosocial view.

The new MRC panel is the latest example where the discredited psychosocial proponents are invited to further influence the future strategy of the MRC.

This is not progress.

One can look at the comments on the recent article in New Scientist with an interview with Professor Simon Wessely to understand the response from ME patients to including this type of research.

We think there is an uncomfortable reality that has to be addressed here.

It is easy to put words on paper but actions speak louder than words.

Quite correctly you write that we need to get the message to the decision-makers.

NICE have undoubtedly got the message. The ME community has taken them to court and that experience ought to have been enough to inform them of the message from people with ME.

However, before we can expect professionals such as doctors and nurses to understand ME we need to agree amongst ourselves what message we put to these professionals about ME.

At the moment they get mixed messages because two charities in this group, AfME and AYME, support NICE and tell professionals they need to follow the NICE guidelines.

AYME states in their December 2008 Link newsletter -

"Whenever AYME attends a conference, exhibition or runs training sessions for health care professionals, we promote the NICE guidelines as being the document that must be followed alongside the RCPCH guideline".

The rest of the group condemn the NICE guidelines and do not want them to be adhered to.
So anything this group does going forward is compromised.

Post NICE JR there are serious problems in presenting a united front when the basis for that front is flawed.

Whilst we support initiatives to re-educate key government and healthcare departments we do not feel it achieves anything to provide totally different views of NICE or of the illness.

Our view of ME is adequately explained in our book Lost Voices and seems to be quite different from those expressed by AfME and AYME.

The upcoming conference being organised by AfME/AYME will be presenting the psychosocial view of ME and influencing directly the NHS staff attending.

The IiME conference will be showing ME as a physical illness with clear biomarkers and research which will actually lead to proper treatments for sub groups of ME.

So we are back to the two views of ME and it is difficult to see how this group can influence government, healthcare services or research-funding bodies if we are presenting two entirely different views and sets of patients all under the term ME.

We feel it is difficult for this group to continue without a clear and unequivocal definition of what the group believes in.

We do not believe the actions and policies of AYME and AfME reflect our view of ME or those of the people who support us.

Although we understand the desire to show a united front amongst charities we believe this front must be built on common foundations otherwise it will never be strong enough to identify and achieve common objectives.

Supporting the current policies of AfME and AYME is not an option for IiME.

We will not accept or support policies which we feel will be to the detriment of people with ME and their families. Until these basic issues are resolved this group will be unable to speak as one.

Perhaps now is the time to take a further initiative and establish a working group consisting only of charities and organisations which denounce the psychosocial view of ME, accept the definition of ME as that defined under WHO ICD-10 G93.3 and oppose the NICE guidelines.

Meeting 8th July 2009

IiME were not able to attend the meeting of this group on 8th July 2009 in London.

As for every other meeting we submitted our comments to the Countess of Mar and all other members of this group in advance and expected them to be added to discussions and added to the minutes of the meeting.

1/ Attendance at Meetings and Visibility of Comments

We would like to return to our previous email (submitted in an email on 12^th December 2008) where we stated the following -

We understand that, as we were unable to attend the last meeting, any decisions made at the meeting would not include our vote.
However, we see no reference in the minutes of either of the meetings to show that our views, as submitted in documentary form prior to each of the meetings, have been discussed or included in the discussions.

We would like to see that our comments have been entered into the discussions. Will the minutes reflect this?

We never received any response from our email of 23^rd March.

2/ GOSH medical meeting on ME/CFS in September to be discussed and the subject of Lightning Process

In the next meeting the subject of the GOSH at a day long medical meeting on ME/CFS in September is to be discussed and the subject of Lightning Process.

Mary-Jane from AYME has written “I share your concerns about this (LP) being included in the meeting”

We find this strange and hypocritical.

AYME have advertised LP for its members and freely allow discussion without seemingly making any critical comment on the lack of a research base, the numerous cases where people have been made worse and the fact that the practitioners of LP are generally not registered healthcare practitioners and take no responsibility for the results.

To state that there are concerns seems to us to be hypocrisy.

One should also remember that AYME and AfME are not in a position to criticise GOSH for including behavioural therapies/businesses as most of their recent joint conference in Milton Keynes included known advocates of the behavioural causality for ME and also included an insurance company representative.

3/ Questions for Esther Crawley CNRCC Children’s Services

We have the following questions for Esther Crawley.

In your CV it states that you published research showing “children with CFS/ME don’t go to school because they are unwell not anxious”. However, isn’t it true that you believe there is a condition termed Pervasive Refusal Syndrome (PRS)?
If the answer to i) is yes then what proof do you have of this, what research is there to prove this really exists?
If the answer to i) is yes then how many children who were diagnosed with ME have you believed to have PRS?
What medical tests do you perform on patients who are suspected of having ME/have ME?
Do you test for acute and/or reactivated infections?

From the minutes of the meeting it appears none of our points were discussed.

IiME were informed by CoM that the questions to Esther Crawley were not asked as they were not appropriate to the discussion.

The recorded minutes of that meeting are available here.

Meeting 24th November 2009

Proposed Agenda for Next Meeting

1/ Attendance at Meetings and Visibility of Comments

AGENDA FOR MEETING TO BE HELD ON TUESDAY 24 NOVEMBER 2009

IN THE TELEVISION INTERVIEW ROOM, HOUSE OF LORDS

FROM 1.30 PM TO 3.00 PM.

1.     Apologies.

2.     Dr James Bolton, Deputy Chief Medical Adviser to the DWP.

3.     Question and answer session.

4.     Minutes of the meeting held on 8 July 2009.

5.     Matters arising.

Lightning Process

APPG Inquiry

MRC Project

Invest in ME membership of Forward-ME

6.     Welfare Reform Bill.

7.     Current Research.

8.     Correspondence.

9.     Any Other Business.

10.   Date of next meeting.