UK Pediatrician Prevented From Working With ME/CFS Kids

[Cort]

Dr. Nigel Speight is a well known pediatrician who has worked with ME/CFS children but the UK health authorities have barred him from seeing them. They have not said why but speculation is because he does not use the CBT/GET methods they require.

After going to a hearing his attorney recommended that he not see any more ME/CFS patient, speak about ME/CFS or have anything to do with it

They play hardball over there!

.

Dear friend/supporter, I am sorry to have to tell you of the result of my hearing before an Interim Orders Tribunal of the Medical Practitioners Tribunal Service on 20 April 2016.

Most of you will be familiar with the sequence of events that led up to this case and the current GMC investigation. At the hearing, my barrister offered that I should voluntarily withdraw from all ME related activity pending further investigation by the GMC. The panel did not accept this offer, but have imposed interim conditions on my registration mirroring the voluntary restrictions I had offered for a period [of] 15 months.

The conditions prevent me from carrying out any work in relation to ME in either a paid or unpaid capacity. The IOT Panel concluded that my practice in the field of ME/CFS may be deficient, and that it was necessary to impose an interim order for the protection of members of the public and to maintain public confidence

On the positive side, apart from these conditions, the IOT has not restricted my practice in paediatrics in general. The IOT has not made any findings of fact and the order will be reviewed after 6 months. The IOT is not the forum in which to challenge the substance of the complaint made to the GMC

To those of you who represent charities, I am afraid that I must with immediate effect withdraw my services as a medical/paediatric adviser. I wish you luck in finding someone to fill the gap.

I will direct all patients and families with whom I have had prior contact back to your charity for advice. Please also understand that these restrictions even extend to preventing me speaking or lecturing on the subject of ME.

To my fellow members of the authoring committee of the International Consensus report on paediatric ME/CFS, I am afraid I also have to withdraw from future contributions. To my friends in Norway and Germany, I am afraid this means that I am unable to continue to support the three families I have already met, either informally or in legal proceedings. Thanks for very much for all your support.

Wish me luck

Best Wishes to you all in your continuing struggles to support patients and families

Nigel

 

[Merry]

If anyone could explain to me why British doctors can be restricted as Dr. Speight has been, I would be most grateful. Does anyone know who complained about him and why?

 

[Seanko]

This has been going on a while & it has been difficult to find out the facts on what has exactly been going on as it is subject to legal proceedings. Here is what I know of a complicated back story

Dr Speight is in his 70s and was a paediatrician in Durham in the North East of England with a special interest in ME/CFS. He wanted to stay on past normal retirement ago but was prevented from doing so. Since then he has been a locum doctor & a medical advisor to several of the UK charities: including the ME Association (MEA).

He has been involved in "interventions" in Britain & Europe whereby children were referred to inpatient CBT/GET treatments and he was asked to help[ return the children to the custody of their parents. The complaint which got him up before the GMC may have come from Esther Crawley, the controversial paediatrician with a clinic based in Bath. However we cannot be certain as the details have not been published.

Possibly the biggest impact will be on him giving talks around Britain & Europe as basically he is too old to practice.

The MEA are holding a meeting on Monday 25th April to decide how to proceed.

 

[Seanko]

The MEA have put details of the case on their website & Facebook pages. They are probably the best place for updates.
Comments GMC impose conditions on Dr Nigel Speight’s licence to practice
MEA Facebook page

 

[Seanko]

Personal Opinion: disastrous as though this might seem at first, it may turn out to be a good thing. It will focus attention on the neglected matter of paediatric ME/CFS and how it should be treated or not. It highlights the work of Esther Crawley who is very good at getting research grants for herself from committees of ageing medics but less popular with the patient community.

Could this be a pyrrhic victory for the complainant?

"A Pyrrhic victory is a victory that inflicts such a devastating toll on the victor that it is tantamount to defeat. Someone who wins a Pyrrhic victory has been victorious in some way. However, the heavy toll negates any sense of achievement or profit. Another term for this would be "hollow victory".

 

[Seanko]

There is a group card for Dr Speight to sign which has been set up.

 

[Merry]

I especially find shocking that a doctor can risk losing a license (is that the threat?) for simply expressing publicly an opinion about the nature of a disease and treatment that differs from -- what? -- another doctor, one with more power? -- the official view at the NHS?

 

[Seanko]

I especially find shocking that a doctor can risk losing a license (is that the threat?) for simply expressing publicly an opinion about the nature of a disease and treatment that differs from -- what? -- another doctor, one with more power? -- the official view at the NHS?

From I can ascertain, the complaint seems to revolve around Dr Speight "underminging & going against another Doctor".

There is a series of tweets summarising a post on another forum which seems to have been removed.
Tweets about DR Speight & GMC

 

[Tony L]

This man has put his reputation on the line for years supporting families who have the misfortune of having a child struck down by our disease. The predicament that many of these parents face is truly awful. They face imposition of a medical treatment regime which will not be effective and therefore face the possibility of blame for its failure.

The blame game was used in relation to behavioural conditions before they were understood as autism, ADHD etc. Having an autistic son I know that if you continue to challenge authority eventually they will fight back with misrepresentations and lies.

Perhaps this is not a great surprise to Dr Speight. Eventually the British medical establishment would act to enforce its authority and so it has. They will continue to play the blame game rather than accept their gross failings in relation to ME.

This action is sending a message to UK clinicians. Our treatments are effective for this patient group, so use them. Stick to the guidelines or else. At a time when the US is seeing the light, the UK remains a dark place for many sufferers.

I wish Dr Speight every success in the battle for his reputation.

 

[Cort]

Personal Opinion: disastrous as though this might seem at first, it may turn out to be a good thing. It will focus attention on the neglected matter of paediatric ME/CFS and how it should be treated or not. It highlights the work of Esther Crawley who is very good at getting research grants for herself from committees of ageing medics but less popular with the patient community.

Could this be a pyrrhic victory for the complainant?

"A Pyrrhic victory is a victory that inflicts such a devastating toll on the victor that it is tantamount to defeat. Someone who wins a Pyrrhic victory has been victorious in some way. However, the heavy toll negates any sense of achievement or profit. Another term for this would be "hollow victory".

Interesting idea. Sometimes this is how change occurs; a lot of light will be shined on this issue and maybe something will change.

 

[Cort]

This man has put his reputation on the line for years supporting families who have the misfortune of having a child struck down by our disease. The predicament that many of these parents face is truly awful. They face imposition of a medical treatment regime which will not be effective and therefore face the possibility of blame for its failure.

The blame game was used in relation to behavioural conditions before they were understood as autism, ADHD etc. Having an autistic son I know that if you continue to challenge authority eventually they will fight back with misrepresentations and lies.

Perhaps this is not a great surprise to Dr Speight. Eventually the British medical establishment would act to enforce its authority and so it has. They will continue to play the blame game rather than accept their gross failings in relation to ME.

This action is sending a message to UK clinicians. Our treatments are effective for this patient group, so use them. Stick to the guidelines or else. At a time when the US is seeing the light, the UK remains a dark place for many sufferers.

I wish Dr Speight every success in the battle for his reputation.

Well said, Tony

 

[Who Me?]

There was something a few months ago on PR. The doctor had written a letter and it was posted but then he requested it be removed, I think in the advice of his attorney.

I thought things were better but apparently not.

I will say there are other docs who have been under scrutiny with their methods of treatment of cfsme. Dr Goldstein for one. Maybe not to this extreme but they are looked at.

But this is just unconscionable. My condolences to you guys who live there.

 

[Laurie P]

http://voicesfromtheshadowsfilm.co.uk/

Voices from the Shadows
1 hour 3min. documentary

Available to view free of charge on Vimeo
promo code VOICES

“Voices from the Shadows” shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper.

This is an excellent film.

​

Available to view free of charge on Vimeo


To go to Vimeo click here and enter the promo code VOICES
DVDs are not currently available to buy.​

Please remember this film is not suitable for children and young people with ME who may be distressed by viewing it. It is intended to educate those who are not familiar with the illness and issues surrounding it.

The film is in English with subtitles in Swedish, Dutch, Spanish, French, Italian, Czech, German, Japanese and English.


“Voices from the Shadows” shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. It was filmed and edited between 2009 and 2011 by the brother and mother of an ME patient in the UK. The film shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the reality of this physical illness and the severe relapse or exacerbation of symptoms that can be caused by increased physical or mental activity, over exposure to stimuli and by further infections. (See Bristol Watershed event videos)

A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismanagement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations very similar to those shown in the film are taking place right now, both in the UK and in other countries.

‘Voices from the Shadows’ received its premiere at the prestigious Mill Valley film festival near San Francisco in 2011, where it won the audience award for favourite international doc. The film has been shown in many countries and in different venues – from parliament buildings to cinemas, universities and homes – from the IACFS/ME conference in Ottawa 20011, to the Stanford ME /CFS Symposium 2014.

The original “Trailer” can be watched here on Youtube or here under the About the film pages on Vimeo.

Watch the “Introduction” to the film – the first 4 mins – in English here – or with subtitles in German, Swedish, Dutch, Italian, French, Spanish, Czech or Japanese on Youtube.

I think the film was powerful and it should be actually part of medical curricula in medical schools in the US… (it) shows how medical arrogance combined with narrow vision knowledge can be so toxic and can bring more suffering to a group of patients that are already suffering at deep levels. Dr Montoya – Professor of Medicine, Division of Infectious Diseases and Geographic Medicine Stanford University School of Medicine – Stanford Medical School. Watch here.

Voices from the Shadows is a poignant documentary, which unveils the reality of people with severe ME/CFS and their carers… We hope that this type of initiative helps to promote a revision of preconceptions about ME/CFS in health researchers and professionals, and to bring renewed interest for research in this field, particularly in light of mounting biomedical research evidence in ME/CFS. Dr Eliana Lacerda – CFS/ME Observatory at the London School of Hygiene & Tropical Medicine

If I could make everyone in the world see just one film, this would be the film I’d choose. It’s my film of the year. It’ll be my film of the decade.

As a critic, I spend my life hoping to find films that will speak to me. “Voices from the Shadows” goes beyond that. It is a film that speaks for me. And I want you to hear it. Scott Jordan Harris Chicago Sun-Times

Voices from the Shadows is the most important and significant film on pediatric ME that has ever been produced – Prof. Leonard Jason Director of the Center for Community Research DePaul University Chicago
​

The film was born of desperation, made by the mother and brother of a severe ME patient. Contributors to the film have helped and participated by being interviewed, by allowing us to use to their documentary material and by giving feedback and approval at every stage.

 

[tara]

This video may give you some insight as to why the powers that be dont want Dr Speight speaking,treating or talking about the biological basis of ME.
Largely it appears as if the PACE authors who are currently under lots of pressure to release data on their trials and have refused to do so want all disagreement of CBT and GET gone.

He has been the hero of the 25% of severe ME patients and has consistently argued that CBT and GET cannot be applied to such ill patients especially children. His experience includes children being seized from their parents arguing Munchhausen by Proxy (the parent is making the child sick) so the state seizes the bedridden child and is forced to endure state sanctioned CBT and GET including having food placed out of their reach to get up and get it. Forced physiotherapy and hydrotherapy for children who are so weak they are on IV fluids.
A horryfing scenario hard to believe this state sanctioned abuse based on "false evidence" for moderately ill Me patients is being imposed on helpless children due to the beliieved psychiatric nature of the illness.
Truly frightening and certainly not in line with "Do No harm" principles. At least one child has died from this.

 

[Seven]

This is huge, we do not want to end up like the lyme people (all doctors being sued and silenced). This is a political issue for all ME/CFS advance. As a community we have to send a strong message. If not this will be just the first.

Maybe we need to figure who initiated the hunt and we do some hunting and start some investigations (if a kid has been damaged by the other group). For each CFS doctor persecuted we should persecute 50 of the PACE ones. This has to be stopped in its tracks.

 

[weyland]

state sanctioned abuse

I'm glad to see that we are calling this exactly what it is. The GMC's actions here will result in direct harm to children with ME. The GMC is supposed to protect patients from bad doctors, not remove good doctors from practice to allow the bad doctors to harm patients without consequence.

 

[Remy]

And here's the official statement from AYME...get out the vomit bucket.

Dr Nigel Speight, April 2016

Many families were helped and supported by Nigel Speight's knowledge, kindness and generosity of spirit, during AYME's early years. Nigel was the charity's Medical Adviser and then Patron until 2009. He resigned from his position because he had a difference of opinion from that of AYME on matters to do with the management of ME. AYME's philosophy of respecting patient choice has never wavered concerning the need to ensure the safety of the child being paramount.

During the time when Nigel acted as AYME's Medical Adviser, the charity's Chief Executive spoke on his behalf at a previous hearing. Following Nigel's decision to resign as Patron in 2009, AYME does not consider it appropriate to lend its formal support on this occasion .
Mary-Jane Willows, Chief Executive

 

[Seanko]

There is now a petition on #MEAction calling on the General Medical Council (GMC) to reverse its decision to limit Dr Speight's activities as a doctor.

Petition to reverse limits on Dr Speight to GMC

 

[weyland]

There is now a petition on #MEAction calling on the General Medical Council (GMC) to reverse its decision to limit Dr Speight's activities as a doctor.

Apparently Dr. Speight has requested that we not sign any petitions in his name for the time being, so they have taken it down.