Invest in ME Research Visit The CMO of England's Office

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Invest in ME Research had requested a meeting with all four CMOs (England, Wales, Scotland and Northern Ireland) and on Wednesday 11 January 2017 a meeting took place with the Deputy CMO of England Dr Gina Radford at Whitehall Court, London.

Invest in ME Research previously wrote about our intention to engage with the Chief Medical Officers of the UK and appraise them of the research into ME that the charity is facilitating and the current issues which continue to exist and which we believe the CMOs have a duty to confront - A Summit of CMOs

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Prior to the meeting the charity had submitted two documents to the CMOs and participants.

One concerning children and the deplorable state that exists as well as case studies of children badly affected by the way that the existing mentality toward ME is allowed to distort proper healthcare. In this document evidence was presented to the CMO of the way many families of children with ME are being harassed and subject to child Protection proceedings.
Though the establishment organisations have totally failed children with ME the harrassment is not, however, confined to vulnerable patients or their families either - as witnessed by this story - (click here).

The following document had also been sent prior to the meeting to all attendees - Summary of developments following CMO’s report of 2002

It was agreed that the meeting would take an informal format to allow free discussion and the available agenda would be used as guidance.
It was mentioned that Invest in ME Research had sent in information beforehand to allow the CMOs time to familiarise with the issues on the agenda.

Dr Radford said she had read the information given and stated that the CMO could not resolve most of the problems mentioned as the CMO’s remit had changed and many of the issues mentioned would be the responsibility of NHS England.
She would, however share the notes with other CMOs in Wales, Scotland and Northern Ireland.

The charity pointed out that the CMO’s remit includes influencing policy and that from experience it seems that ME is not on the CMO’s radar.
The charity mentioned that the previous and current CMOs had never accepted the charity’s invitations to attend or speak at the international conferences that the charity had organised in the past 11 years.
The invitation was always either too early or too late.
There never seemed to be a right time and this sent a message to patients, carers, researchers and doctors interested in ME that ME was not on the CMO’s agenda.
The charity explained that the meeting was taking place and as far as we were concerned we were talking directly to the CMOs of the UK.

The charity asked directly whether the CMO was happy with the current status of ME research and what was their official opinion on ME?

Dr Radford stated that she could not speak for the CMO and she made the point once again that the CMOs of England, Wales, Scotland and Northern Ireland do not run the NHS. It is the NHS England that runs the services and we would need to discuss these matters with them.
The CMO’s relationship with the NHS and remit has changed since 2002 when the 2002 CMO report on CFS/ME was published.
Parameters have changed and now the CMO’s remit is to give broadly advice to the government.

The charity read out the publicly stated remit of the CMO such as protect the public, tackle inequality, review policy (mentioned no policy for ME), influence by statements and discussions. CMO Remit

Countess of Mar said Dr Martin McShane makes nice noises but nothing happens.

The charity described cases provided in the accompanying document where severely ill children with ME who failed to recover with CBT/GET programmes were then re-diagnosed and given labels such as pervasive refusal syndrome and parents/carers accused of Munchausen Syndrome by Proxy.

The PACE trial was mentioned and Dr Radford had not read PACE.
So Countess of Mar described the well-known shortcomings of the PACE trial including the Information Commissioner’s Office being involved leading to a court case to get raw data released and reviewed according to the original protocol and the damage it has caused to the worldwide patient community.

Professor Edwards explained the reasons why the PACE trial and CBT/GET studies were poor science and the system is failing as it allows authors of these papers take on roles as reviewers of the same papers.
The Cochrane review was an example of this.

Dr Gibson described the annual IiMER Colloquium/Conference and how the science is getting interesting.
There seems to be lack of duty for biomedical research into ME, neglect in taking an all- around approach and ME is not getting its fair share.
Dualism was a waste of time and research should open up and the government has failed to take it up.

Fane Mensah described the situation for a young researcher.
He said there needs to be support for young researchers.
Students who are thinking about their career choices need to know there is a future in this exciting and complex field.
He described how the patients he sees as part of the research funded by Invest in ME Research are so grateful that someone is taking them seriously and listens to them.

The charity asked Dr Radford how the CMO made decisions when taking up issues such as antibiotic resistance, Ebola, Zika virus etc.?
Dr Radford said it was because they were major worldwide issues.
The charity said that ME is a major worldwide issue - yet no one knows numbers affected (only rough estimates) and the diagnosis is inaccurate and variable.
Sally Davies should at least make a brief visit to the conference or send a representative to learn about the latest developments.
Dr Clare Gerada as the chair of the Royal College of GPs gave a talk at the IIMEC8 conference in 2013 and admitted GPs knew very little of ME.

Professor Edwards said ME was a bigger problem than rheumatoid arthritis.
Epidemiology in general was lacking and current service provision was poor.
The direction of ME research has not been founded in good science and the Norwegian phase III rituximab trial results will guide the future.
The psychiatrists do not understand the problem and that is a BIG problem.
The PACE trial is a text book case how not to do a trial.

In Practical terms: we need physician led services (very few of which currently exist) which provide help and continued surveillance.
ME is an identifiable problem due to the characteristic of post exertional malaise (PEM).
Surveillance is needed as other diseases such as lymphoma can be hidden in that cohort.

Major change has happened in USA, but not in the UK.

Dr Radford asked what we wanted to ask the CMO.
The following points were stated -

• Genuinely appreciate the size of the ME problem
• Maintain consultant led services
• Appreciate new research
• Appreciate current services have been hijacked by bogus science and patients find that dispiriting and dangerous

NICE was briefly discussed and a decision whether the guideline will be reviewed should be made by the summer of 2017.
Dr Radford said that it is important there is new research that they can look at otherwise the guideline remains in a vacuum.

The current recommendation of GET was brought up as harmful and putting children in danger.
The severely ill need information and support.
Professor Edwards mentioned MS patients get 6 monthly neurology appointments but ME patients get nothing.

Problems with FITNET were mentioned and Dr Radford was aware of this and stated that FITNET was being reviewed.

Dr Gibson said research is moving toward finding biomarkers.
Metabolomics was proving promising as presented at the Invest in ME Research international conference.
The approach has been too simplistic in the past.

Dr Radford mentioned she is involved in an alliance of rare diseases and that there are hundreds of diseases in the same situation as ME.
The charity said these rare diseases are recognised and patients are not dismissed and stigmatised by the establishment the way ME patients are.
ME patients’ healthcare complaints, unrelated to ME, are often ignored and dismissed due to the patient’s ME label.

The importance of accurate diagnosis with careful history taking was mentioned as endocrine disorders are often misdiagnosed as ME.

Actions

Dr Radford finished the meeting by summing up action points

• Highlight emerging research (relevant for NICE guidelines)
• Mention IiMER colloquium/conference to people of influence
• Agree that a new meeting arranged by the charity will take place later in the year when the Norwegian rituximab trial results would be known by the team involved

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IiMER Summary

Did we expect more from the visit with the CMO?
Of course!

Our aim is not to have just a cosy chat and keep the status quo. Action is required.

As we stated before ME is a UK/worldwide problem - we did expect (and request) that all UK CMOs attend.

But we have the CMO's attention now, to some extent.

We will not leave it alone.

We have a follow-up meeting planned and we will ensure that the CMOs of UK do not remain in the dark about the seriousness or severity of the issues with this disease.

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References

Articles on PACE Trial

Articles on ME/CFS by Margaret Williams and Professor Malcolm Hooper