Ignoring the Elephant in the Room

In the world of ME it is one of the strangest contradictions, and the biggest scandal, that organisations that are supposedly there to protect and help the patient are often seen to be taking actions, or avoiding taking actions, that lead to neglect or abuse of the patient community.

Yet some of these organisations are seemingly oblivious to their negligence in ignoring the bias that exists in their operation and practices - or perhaps just unwilling to recognise the elephants in their rooms.

As patients have learnt to their dismay the establishment organisations in the UK are apathetic at best, and completely negligent at worst, when it comes to ME - either research, treatment or education.

How is it possible that an organisation which seems to understand little about ME, and demonstrates a complete ignorance of what patients need, can be allowed to further increase damage to patients by taking action to limit the ability of a well-regarded clinician - especially when there are so few around?

Dr Nigel Speight is known throughout Europe as a compassionate, learned paediatrician who has fought for patients - children and vulnerable young adults - when the establishment has let them down.

The only paediatrician whom IiME would recommend to patients.

The GMC have not shown any interest in taking any action to help people with ME - yet how sorely help is needed (see A Day with a Son with M.E. or Lily's Story')

Now the GMC has seen fit to deny Dr Speight the possibility to continue to give this support to young people with ME due to allegations that are not in the public domain from individual(s) who are not named.

Dr Speight has been limited in what he can do by the GMC - click here

4 a. He must confine his practice to NHS posts as a Consultant General Paediatrician

b. He must not carry out any work in relation to Myalgic Encephalopathy Chronic Fatigue Syndrome in either a paid or unpaid capacity

c. He must refer any patient with a possible diagnosis of Myalgic Encephalopathy Chronic Fatigue Syndrome to another consultant Paediatrician

d. He must keep a log detailing every case where he has make a referral under ‘c’ above

We saw no action, or interest, from the GMC when the Smile Study was proposed and underway.

We saw no action from the GMC when confronted with evidence in Sophia Mirza's case.

Yet one paediatrician in the whole of UK, who treats ME patients with dignity, belief and passion to work for what is best for the patient, is hounded and barred from practice due to charges brought from very dubious quarters.

Our letter in support of Dr Speight is here and we cannot add more to that

Oliver Flude, Investigating Officer

General Medical Council

3 Hardman St Manchester M3 3AW

Re Hearing of Dr Nigel Speight - Case reference number OF/C1-1180166797

14 January 2016

Dear Mr. Flude,

Invest in ME is a UK charity that was founded by patients and parents of children with myalgic encephalomyelitis/chronic fatigue syndrome (ME or ME/CFS) in September 2005 and registered as a UK charity in May 2006 (charity no 1114035).

The charity aims to educate and campaign for biomedical research and funding of ME and is currently funding research at UCL and UEA/IFR. Invest in ME are founder members and current chair of the European ME Alliance (EMEA), a group of 13 European national patient organisations campaigning for ME awareness and research in Europe [1].

Recently EMEA joined the European Federation of Neurological Associations (EFNA) whose aim is to influence policy makers and legislators in Europe (and particularly in the European Union) to prioritize resource allocation to reduce the burden for people living with a neurological disorder including ME [2].

The charity has organised 10 international CPD accredited ME conferences and 5 colloquiums where researchers and clinicians discuss the latest research developments and form collaborations [3]. One such collaboration facilitated by IiME and EMEA is the recent formation of EMERG – The European ME Research Group – a grouping of researchers from seven European countries who aim to collaborate together in research into ME [4].

The charity helps individual patients who contact us by providing information and advocacy.

We heard recently of the hearing being set up to investigate whether Dr Speight’s behaviour and his way of practicing puts children with ME at risk.

When there is a paucity of doctors, especially paediatricians, who are knowledgeable about ME then it seems outrageous for anyone to report Dr Speight for any infringement of medical ethics with regard to ME. We have never heard of Dr Speight being criticised by any patients or their families. On the contrary he is extremely well regarded by everyone in the international ME field and has presented at our CPD accredited international ME conferences and invited to speak at numerous conferences in Europe.

Dr Speight is honest and kind in his dealings with patients and defends them against spurious child protection proceedings. He has been invited to give expert evidence in a number of child protection cases concerning ME in UK and Europe.

Where there are some doctors who do not believe in ME as a diagnosis or do not accept that children with ME can be so seriously ill that they need tube feeding then flawed diagnoses are introduced such as Pervasive Refusal Syndrome. It is in these cases that Dr Speight’s experience and knowledge have provided enormous help to child patients and their families.

The charity often receives complaints from patients and carers regarding the way CBT and GET or GAT (Graded Activity Therapy) is being forced on children with ME as treatments by the NHS doctors, or so called paediatric consultants, who just follow the NICE CFS/ME guideline and treat ME as an unhelpful behavioural problem instead of a neurological disease as acknowledged by the WHO and by the UK government.

It is at times such as these that Dr Speight is called upon to help by desperate families who see their children deteriorating from such forced regimens.

The CFS/ME NICE guidelines have been declared ‘not fit for purpose’ by most ME charities and even Professor Mark Baker of NICE has stated himself at a Forward ME meeting in June 2014 that he sympathised with the position of those who called for a revision [5].

He said the CFS/ME NICE Guideline was not comprehensive and it did not promote innovation. It refers to interventions such as CBT and GET but that evidence base is contested as many scientists outside the ME field have now joined with the demands of advocates and charities like ours to request raw data from the so called PACE trial to be released for independent scrutiny [6, 7, 8].

Even though the NICE CFS/ME Guideline was not based on the PACE trial, the PACE trial was meant to be a definitive trial that would consolidate the evidence of CBT and GET as preferred treatments for CFS/ME.

As it turned out the evidence is not there and the claims being made about efficacy, safety and cost effectiveness are now being called into question.

We constantly receive letters from the Department of Health stating that very little is known about ME and yet without doctors like Dr Speight, who are willing to believe in and listen to children with ME and learn in the process, many patients would have little hope for a better and safe future. Paediatricians and doctors in the UK generally demonstrate an overwhelming degree of ignorance toward ME– either disbelieving it exists, misdiagnosing other diseases in its place, failing to identify the potential consequences of severe ME and failing to spend any time in improving their education about the disease. Sometimes they just continue to hold their pet theories on this disease.

The Institutes of Medicine concluded in their report of 2015 [9] that ME is an organic disease.

The IOM report looked at the effects on children from this disease [10]. “There is clear evidence of the impact of ME/CFS on the education and social development of these young people. The stigma and social effects of paediatric ME/CFS include the loss of normal childhood activities and in some extreme instances, inappropriate forcible separation of children from their parents”

As part of the research review carried out the IOM reported on an Australian study of 189 adolescents by Rowe and Rowe concluded that evidence for somatization disorder among young people with ME/CFS was negligible. “They all note that ME/CFS symptoms often make it more difficult to do schoolwork, so children and adolescents with ME/CFS may be misclassified as having “school phobia.”

Invest in ME deplore the concocted term school phobia, or pervasive refusal syndrome, and those promoting these terms in relation to ME/CFS, as they have never applied to children with this disease.

Dr Speight is by far the best paediatrician there is for ME in the UK and it is appalling to see him being reported to the GMC. We need more doctors like Dr Speight who really listen to and believe in their patients.

We urge the GMC to throw out this case and perhaps instead investigate the background and motives of those who have brought this case against Dr Speight. It is perhaps a better use of the GMC’s resources to investigate those who are involved in bringing this case before the GMC as we feel it is their conduct and treatment of young people with ME that really needs to be the subject of any investigation,

Yours Sincerely,

Chairman and Trustees Invest in ME

Charity Nr 1114035

References

  1. EMEA: http://www.euro-me.org/
  2. EFNA: http://efna.net/
  3. Invest in ME Conference 2016: http://www.investinme.eu/index.shtml
  4. EMERG: http://www.investinme.org/EMERG.htm
  5. Forward ME June 2014: http://www.forward-me.org.uk/25th%20June%202014.htm
  6. IiME letter to Lancet: http://www.investinme.org/IIME-Newslet-1511-01.htm
  7. An open letter to Dr. Richard Horton and The Lancet: http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/
  8. Why the scientific community needs the PACE trial data to be released: http://blogs.plos.org/mindthebrain/2015/11/11/why-the-scientific-community-needs-the-pace-trial-data-to-be-released/
  9. IOM Report - Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - http://www.iom.edu/reports/2015/me-cfs.aspx 10. Invest in ME IOM Report Analysis - http://tinyurl.com/kykkhx8

It is difficult to comprehend how an organisation such as the GMC can get it so wrong.

Much like the Lancet, or the so-called Medical Research Council's "Expert Panels" on ME, or NICE when relating to their guidelines - one has to ask what is the point of these organisations?

The GMC -

We help to protect patients and improve medical education and practice in the UK by setting standards for students and doctors.

We support them in achieving and exceeding those standards, and take action when they are not met.

As always - actions speak louder than words.

And the GMC is ignoring the elephant in their room - the problem of how to deal fairly with ME and avoid total bias toward an outdated establishment characterisation of this disease.

And Now.....?

The limited response allowed after the news of this was broken indicates the level of incredulity and disgust amongst people with ME and their carers.

This is not going to change!

We therefore feel the facts of this case need further analysis.

Some pertinent questions need to be answered.

From where did these allegations originate?

If they were from patients then anonymity probably has to remain. However, we doubt this is the source of complaints against Dr Speight bearing in mind his incredible service to vulnerable and abused and threatened yound people with ME.

So more likely the allegations have come from other healthcare staff - or others associated with elements of healthcare.

If this is so then anonymity of those making the allegations may not be such a clear case.

Why has this occurred so quickly?

Why has the GMC acted so quickly to prohibit a known and respected doctor with outstanding credentials in terms of ME care?

Why has no account of supportive testimony from charities such as IiME been analysed throughly?

>Let Us Gauge Others' Reactions

Patients have already shown their disgust at the way Dr Speight is being treated. This anger will not subside.

So it would be interesting to get support for Dr Speight from other areas - not just ME patients.

  • What is the CFS clinics’ position on this?
  • What does the MRC collaborative think?
  • We have little expectation of the MRC collaborative - but what does the chair or vice-chair of the MRC collaborative think of this?
    Perhaps they would consider coming forward and expressing support for Dr Speight and request that the GMC reconsider their verdict.
  • What position does BACME take on this?

Further References:

  1. Letter from Dr Nigel Speight - 22 April 2016
  2. Invest in ME's Letter of Support for Dr Ngel Speight
  3. VERY SEVERE ME/CFS - Dr Nigel Speight Talk at IIMEC9 Pre-Conference Dinner
  4. 2010 - IiME Response to GMC Re Hearing of Dr Sarah Myhill - Case Reference: PB/C1-314994282

Last Update April 2016

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