Science for Patients: Dr. Nigel Speight (Pediatrician) 2014 interview with Dutch ME/cfs Association

On Tuesday, January 7th, the twenty-eighth broadcast of [Science for Patients,] initiated by the Dutch ME/cfs Association and featuring British pediatrician Dr. Nigel Speight, can be viewed with the theme:

Dr. Nigel Speight on his role in lawsuits regarding children with M.E.

In this online lecture, English pediatrician Dr. Nigel Speight is interviewed by Rob Wijbenga, chairman of the ME/cfs Association and coordinator of the 'Science for Patients' project.

Dr. Nigel Speight has been involved in 30 lawsuits in which children with M.E. were at risk of being separated from their parents by social services.

In this interview, Dr. Speight discusses these lawsuits and the situation regarding children with M.E. in Great Britain.

Lecture 28

Interview with pediatrician Dr. Nigel Speight 2013 of January 7th, 2013

I am Rob Wijbenga, Chairman of the ME/cfs Association Netherlands, and delegate to the Science for Patients project. In that capacity, I am speaking here with Dr. Nigel Speight, a pediatrician, who has been kind enough to participate in this project and will give six short lectures on various aspects of M.E., based on questions from patients.

Welcome, Dr. Speight, and thank you very much for your cooperation. I believe you have been involved in many cases where children with M.E. were at risk of being separated from their parents by social services. Could you tell us something about that?

Yes, that is a very painful subject. It is one of the most unpleasant matters I have dealt with in my entire career as a doctor. I have seen it happen all over the British Isles, and have dealt with such cases throughout Great Britain. Apparently, all with the same cause. Often, this is simply because doctors do not protect patients with the diagnosis of ME/cfs. As a result, they run the risk of being prosecuted based on other diagnoses.

I have been involved in approximately thirty cases, all of which resulted in Child Protective Services proceedings involving hearings and the threat of out-of-home placement. Fortunately, in most cases, we managed to prevent this by intervening early with a second opinion. However, in quite a few cases, that threat was real, and one or two children were actually removed from their homes against their will. Because of these lawsuits.

Can you tell us about a specific case that illustrates this problem?

Yes, one case took place in a region in the Midlands. Let's call her Tiffany for protection; that isn't her real name. A delightful thirteen-year-old girl, lively, talented, musical, and perfectly healthy until she was struck down by an acute form of M.E.. She was so ill that her mother had to ask doctors at the hospital if she could be admitted. She did so openly and with full confidence, and at the hospital she came under the care of a pediatrician who believed in M.E., and everything seemed fine.

But gradually, the multidisciplinary team, which included a child psychiatrist, an occupational therapist, and a physiotherapist, took over the case. They held weekly meetings in which goals were set for the girl that she had to achieve. She was wheeled there in her wheelchair with her head hanging low, had to sit there the entire time, and agree to try to reach those goals during the coming week. She was in the hospital for three months and, despite her cooperation, continued to deteriorate. The experts did not tolerate the lack of improvement and blamed her mother. Therefore, her visiting rights were restricted to after six o'clock in the evening. As a result, the physiotherapist had free rein all day long. The nurses placed her food out of her reach, making it a struggle to get to it. Every time her mother came, she found her demoralized and in tears. Despite her mother's limited visiting rights, the child continued to decline. The first pediatrician said: "You might as well take her home," so that is what her mother did.

Then their family doctor arrived and subjected Tiffany to intensive, half-hour interviews to determine her mental state and its causes. The girl continued to talk to this doctor reluctantly, and he made her cry. Subsequently, she reported to social services that she could not take responsibility. Social workers, accompanied by the police, arrived, separated daughter and mother again, and treated her as a case of Munchausen by proxy. Her mother was only allowed to visit her in the presence of a social worker. There were plans to place her in a foster family for six months, based on the idea that she would get better because her mother was responsible for her illness.

I was called in by an independent social worker and found the girl completely demoralized, resigned to her removal. And I simply argued that their handling of her M.E. had no basis whatsoever and that it was not the mother's fault. Fortunately, we managed to get the girl back home, after which she slowly but surely recovered. She has now graduated. So that had a happy ending, but after a road full of unnecessary misfortune. That was a fairly typical case where things had already gone very far.

You could certainly call that a fine intervention…

That is the advantage of the system of independent social workers. No matter how far along you are in the legal proceedings, there is always the possibility of a second opinion as an objection to such procedures. I would like to state that I have been successful in 28 of the 30 cases in which I was involved. But the two I lost were very unpleasant.

Brilliant! And do you know of other cases involving other pediatricians?

Yes, there was a similar case that differed in certain respects, and in which psychiatry had a greater influence. That also involved a thirteen- or fourteen-year-old girl in Scotland. She was under the care of a pediatrician who had diagnosed ME with great certainty, and she was in moderately to moderately poor condition. But then her condition worsened, and that is a risk factor. The severe form of M.E. is not tolerated by the professionals.

The pediatrician lost her patience and referred her to psychiatry, where a different diagnosis was made. This time not Munchausen by proxy, but something called 'Pervasive Refusal Syndrome'. But it wasn't that the girl refused to cooperate. She cooperated, but was simply very ill.

When I was called upon to intervene, I found her in a psychiatric ward, curled up like a fetus, receiving tube feeding and extremely sensitive to light and sound. Every time the nurses closed the door, a shiver ran through her body. But the psychiatrist did not allow her ear protection, because that would reinforce her avoidance behavior. And he kept speaking to her in a very harsh voice: that way, they would surely cure her of her Pervasive Refusal Syndrome. Fortunately, the court order was reversed a week later, and she went to a friendly nursing home where she could recover slowly but gradually.

Do you have insight into the factors that lead to such a situation?

It is easy to blame the social workers because what they do comes across as so cruel when they get involved, but I think we should first and foremost point the finger at the medical professionals. It is their duty to make a clear and convincing diagnosis for "ME/CFS". If they do so, it should have a protective effect. But in many cases I have witnessed, there wasn't even a diagnosis. And then education officials initiate care procedures for truants.

So, to begin with, doctors need to have their act together. Social workers only make a mistake if doctors fail to protect the child with a diagnosis. I have seen a great deal of real abuse in my life and have been involved in protecting many severely abused children. And to now see from the other side that innocent families are being hounded by social workers who are supposed to protect children is quite remarkable. I once spoke with a nine-year-old boy who was being threatened with child protection procedures, and as part of my research, I asked him about his three wishes—something you do to gauge a child's mind. He said it so beautifully: 'I wish there were better judges and social workers in this world who would better protect children who need it, and not hound families like mine.'

A nine-year-old said that?

A nine-year-old child. Children can be very wise.

I must say that when someone starts child protection proceedings, it is just like an ocean liner. A behemoth. It is almost impossible to reverse. Take a social worker who has experience with child protection. He is used to parents who persist in their innocence, and has to try to get the better of them while they just keep going. And the further into the proceedings, the more professionals dig themselves in, unable to afford to lose face or admit they are wrong. I want to share one wonderful experience with a social worker who completely changed her mind after seeing the film 'Voices from the Shadows' , which deals with this. Afterward, she defended the family, dismissed the psychiatric diagnosis of child abuse, and helped them withstand further pressure. So in that case, the film did a lot of good.

Fortunately, there are such cases.

In most cases, independent thinking does not occur. There is a kind of conspiracy throughout the entire case discussion, and they all voted the same way in unison. They all feel supported by one another.

And you see no change for the better in this country?

I currently have three cases under consideration, so that is not a good sign.

How do you explain such a spectacle, in which otherwise caring professionals are guilty of what you call child abuse by professionals?

As a social psychologist, Dr. Leonard Jason states very clearly that professionals can collectively commit atrocities that they could never commit individually. Yet somehow, in their self-satisfaction, they can agree wholeheartedly on a matter that is sharply defined for them and continue along this line. I keep longing for that little boy who said the emperor had no clothes. But during the process, personal opinions remain absent. That is why it is very difficult to stop a process once it has started. I am simply perplexed by how few doctors can convincingly diagnose "ME/CFS" in order to protect children. Of course, I only see the bad cases. Perhaps many children are being protected.

Educational experts put pressure on them to ensure school attendance. If children are not protected by a diagnosis, they set the matter in motion. I sometimes think that social workers dealing with such innocent families are relieved to have such a simple objective. For most of the families they deal with are very difficult. If I were a social worker at Child Protective Services, I would much rather have tea with a respectable, innocent family and dedicate a year or two to it, than visit a home where my ties are being cut outside and I am threatened with German Shepherds.

But I must say that once the process is set in motion, something happens that forms an almost sadistic element in a few of the worst cases. They cannot help but see the suffering they are causing. And often, as a group, they fail to really talk to the child, who is usually old enough to express their opinion and put them on the right track. When you talk to the child, it all becomes clear.

I sometimes think we should compile a file of all cases. I haven't gotten around to it yet, but we should give it to parliamentarians, and to college lecturers, and pediatricians, and to everyone, because things are not going in the right direction at the moment.

So you don't see any other institution growing at all?

Sometimes I feel like it is getting worse.

You also mention a group of psychologists who work together. They all feel supported by the unity within their group.

Yes.

So you see independent psychologists being carried along by this current?

I have seen quite a few cases where the fact that the family refused the help of a psychiatrist led to the child ending up with Child Protective Services. Those psychiatrists felt rejected and initiated proceedings almost out of revenge to 'protect' the child.

I feel compelled to speak my mind that there is sometimes another aspect attached to this that stems more from the pediatricians: doctors who believe in their own therapies. Whether it involves building up physical activity or cognitive behavioral therapy. And when it concerns a severe case and the family cannot travel, they are accused of disregarding medical recommendations. Adults are allowed to do that, but if parents refuse on behalf of their child, the pediatrician immediately states that they are refusing medical advice and that this constitutes child abuse.

So that’s practically a law…?

Yes. Well, it is the unfounded belief that they have effective treatments. Whereas often those treatments, the physiotherapy, actually make the children worse.

Does anything come to mind that could, let's say, bring about a new way of thinking? What tools are currently available for that, if any?

I cannot possibly think of anything at the moment. Actually, nothing is happening. Perhaps a treatment will be found that allows doctors to correctly diagnose M.E. and social workers will have nothing left to refer. But something drastic needs to happen. Another possibility is that a few families start legal proceedings against the professionals and launch a counterattack. But I think most of them are so worn down and so afraid of repercussions that it is beyond their control. So, at this moment, I am still very pessimistic.

Thank you very much for your participation. People all over the world are looking forward to your participation in the lectures we broadcast on our YouTube channel. Thank you very much.

Lecture 29: What are M.E. and CFS?

Web lecture by Dr. Nigel Speight, paediatrician, broadcast on 14 January 2014

How did you become involved with M.E.?

I am Dr. Nigel Speight. I am a paediatrician. I worked in the northeast of England. During my 25/30 years of experience as a paediatrician, I developed a great interest in "ME/CFS" in children. Eventually, I have seen more than 500/600 patients throughout the country, and I am still continuing to do so.

When I had just qualified as a doctor, I knew nothing about M.E., and I heard my colleagues speaking negatively about adult patients with M.E.. 

One of my colleagues said: “They are all not right in the head.”

Then I saw a 14-year-old girl in a wheelchair, who told me that she had M.E., and I asked her to tell me about it. It was clear to me that her symptoms were so real that I could do nothing other than believe her. Once word got around that I believed in M.E., a great many M.E. patients were referred to me.

What is M.E.?

We do not yet understand enough about it to call it a clearly defined disease. 

So we can best describe it as a clinical syndrome.

A clinical syndrome is a collection of symptoms and characteristics that run through it like a common thread. You see them again and again and can confirm: “Yes, this fits the pattern.”

(These is untrue and was untrue at the point of this statement being made by Dr. Nigel Speight so I don't believe him, to be a particularly honest individual)

So at the moment it is a clinical syndrome that we still understand little about, and because of that it is unfortunately also rather controversial.

What are the main characteristics of M.E.?

The main characteristic of M.E. is excessive fatigue and weakness. 

(This is untrue, it's cognitive impairment and motor weakness, but fatigue and weakness could be present in multiple illnesses caused by infectious illnesses)

You are not simply tired. You are tired, but it becomes even worse through physical or mental exertion.

(That's not an accurate discription of M.E.. Fatigue and Tiredness, might not even be present)

The worsening after exertion is the main characteristic.

(The main characteristic of 'M.E.' is it being a form of 'Missed Polio' hence originally being labelled as 'Atypical Polio' and it being caused by an 'enterovirus')

In addition, there are a lot of other symptoms that are clearly distinguishable, and there may be as many as twenty, all reasonably characteristic.

But this core feature is central and distinguishes M.E. from ordinary poor health due to other conditions. 

What is CFS?

That is somewhat difficult. Some people regard 'Chronic Fatigue Syndrome' and 'M.E.' as the same thing, and personally I think there is some usefulness in thinking of them that way.

(They are NOT the same thing, M.E. is an acute onset 'Infectious Encephalomyelitis' caused by an 'Enterovirus' coined after an outbreak of this very 'acute onset' neurological disease by Sir Donald Acheson, at the old Royal Free Hospital in 1955, and CFS is based upon a vague "symptom-based, diagnosis of exclusion" criteria invented in 1988 by Gary Holmes and Stephen Straus, so was... and is always, a "misdiagnosis")

But the problem is that some definitions of 'Chronic Fatigue Syndrome' also encompass a number of other people who do not have M.E., but who have, for example, simple depression.

(No fucking shit)

This may have led to some of the controversy surrounding it and to a number of arguments against the results of individual studies.

In general, however, it is quite correct to use both terms as equivalent and synonymous. 

(No, thats wrong, Speight is no better than Shepherd, and clearly is not a particularly honest doctor)

Does the term ‘M.E.’ adequately describe the disease?

I think one of the advantages of using the term M.E. or Myalgic Encephalomyelitis is that it is a strong term which implies that this is a physical, organic disease.

(The advantages would be to apply the very name to the historical patients, who have actually had an 'acute onset' infectious 'encephalomyelitis' by an 'enterovirus', and NOT to patients, who haven't... and give them a 'correct diagnosis', for what they actually have wrong with them)

For that reason, most patient groups prefer the label M.E. for their condition.

(Patients with Enteroviral-induced 'Atypical Poliomyelitis', would prefer that... for obvious reasons, and would prefer to not have the name of their illness, being 'hijacked' and 'conflated' by other patients, charities and groups, which is currently, what is going on, which is a form of 'false misrepresentation')

In contrast to the term "Chronic Fatigue Syndrome", which in the opinion of many sounds rather wishy-washy and not very powerful, and can lead to 'disbelief' and a lack of support for patients who are given that label.

(It's clearly meant to capture 'Fatigue-defined illnesses' and NOT Myalgic Encephalomyelitis, to start with)

I generally find that doctors who use the term M.E. are better advocates for their patients and are more popular with them than those who use the term "Chronic Fatigue Syndrome". 

(It's NOT a popularity contest, and you are an terrible advocate for M.E. Patients, Dr. Speight)

Lecture 30: “Diagnostic Guidelines for M.E.” is the one immediately after College 29. It starts on PDF page 8.

Here is a close, section-by-section English translation of the Dutch text.

Lecture 30: Diagnostic Guidelines for M.E.

Web lecture by Dr. Nigel Speight, paediatrician, broadcast on 14th January, 2014

How can M.E. be diagnosed?

How do you diagnose M.E.? In principle, the diagnosis is made by taking the medical history very, very carefully. This can take as long as an hour, because the patients have so many complicated complaints.

(Nope, enteroviral brain and spinal cord infections are diagnosable, through Lumbar Puncture PCR, MRI and SPECT)

Because there are no tests for this condition, taking the medical history very carefully is absolutely the principal way of making the diagnosis.

(Absolutely untrue and was untrue, when this statement was made?) 

It is therefore what we call a clinical diagnosis based on probability, because at the present time there simply is no clearly reliable test for confirmation.

(Utterly bullshit, from a 'charlatan' self-presented expert)

Which diagnostic tests are a must?

In paediatrics, the diagnostic picture is fairly clear. There are far fewer differential diagnoses than in adults, and, as I said, taking the medical history carefully is the most important way of making a possible positive clinical diagnosis of M.E.

(Nonsense, the guy's a charlatan, it's NOT FND)

There is no test that provides a definitive answer.

(Bullshit)

The reason for nevertheless carrying out tests is simply to 'exclude' other conditions that resemble M.E. 

(No thats for your 'fatigue syndrome' CONCEPT and not for 'M.E.' and are 'mixing' up two seperate things, in 'M.E.' and 'CFS' criterias)

In practice, in children there are not many conditions that closely resemble M.E. 

(Other infectious diseases, do have 'fatigue' and 'weakness', which Dr. Speight claims are prominent symptoms in M.E.)

What are the main diseases that need to be excluded?

When you make the diagnosis of M.E., you must have a 'clear differential diagnosis' and you must also 'consider other possibilities'.

(You clearly are NOT doing that)

In paediatrics this is usually fairly straightforward, but clinically you can look to see whether there is anything atypical about it.

(WTF, I don't believe you have a goddamn clue, what you are doing? Just an incompetent doctor and charlatan, like most)

I have seen cases that were attributed to M.E. but turned out to be a brain tumour.

(Possible)

They could also have myasthenia gravis or Addison's disease.

(Possible, or as comorbid diagnoses)

These conditions are very rare, and M.E. is fairly common. 

(No shit but you clearly still have no idea, what you are doing?) 

But routine clinical tests and a proper clinical approach, can help to clarify the situation.

(You previously stated, "There is no test that provides a definitive answer")

Lecture 31: ME/CFS and the Course of the Illness

Web lecture by Dr. Nigel Speight, paediatrician, broadcast on 28th January, 2014

How does M.E. begin?

M.E. can often begin very suddenly and severely during an acute infection, and in a large number of cases it begins this way.

(Myalgic Encephalomyelitis, also known as 'Enteroviral Encephalomyelitis' is an 'acute onset' neurological disease)

In paediatrics, children often have a kind of warning signs of the illness; they have not been completely well for one or two years beforehand, and then they experience a sudden deterioration.

(A chronic 'enteroviral infection' is possible)

This is often triggered again by another virus, by illness, or by a great deal of stress.

So it can begin in different ways, but it probably begins gradually, more often than suddenly.

(False because 'Myalgic Encephalomyelitis' also known as 'Enteroviral Encephalomyelitis' is an 'acute onset' neurological disease, that hits suddenly... so that is the reality of 'correctly' diagnosed individuals, but a 'chronic infection', being present still after an 'acute viral' illness... might not necessarily come with a sudden 'acute onset' Encephalomyelitis, upon onset but may come later; upon 'rapid' and 'sudden' deterioration)

What makes M.E. worse?

Some of the very severe cases begin suddenly and remain very severe. Recovery can be extremely slow, and the illness can last for many years.

(So back to a sudden onset, make your mind up)

If you look at the entire group of children with M.E., you see that the condition is extremely unpredictable. 

(Correct)

Remissions and relapses can occur just like that. It can go up and down like a graph for several years.

(Relapsing-Remitting, and Progressive Decline can happen similar to M.S.)

Of course, things can happen that cause the condition to deteriorate. This can be due to stress, excessive exertion, or pressure to return to school.

(Possible)

And those cases can often deteriorate severely because of incorrect management.

How can that deterioration be stopped?

First of all, we have to admit that we do not yet have a cure for M.E.. I think it is very important that doctors face up to this.

(True)

So we should not talk about treatments, but about managing it.

(Correct)

And the first law must be that you do no harm. That you do not make the condition worse by allowing or encouraging the patient to do too much.

(True, but I'd say you yourself as contributed to harms, Dr. Speight)

My motto for patients is always:

“Take two steps back before you take one step forward.”

Because at the beginning of the illness there is an automatic tendency to do too much.

(True)

If you can ensure that they do not deteriorate, you can ease off and hope that they improve spontaneously, while awaiting the discovery of a cure for this nasty condition.

(Yes)

Lecture 32: M.E. & Children, Part 1

Web lecture by Dr. Nigel Speight, paediatrician, broadcast on 28th January 2014.

What are the main characteristics of M.E. in children?

Almost the first thing to say is that the illness is very clearly defined here. Seeing that M.E. occurs in children is, as far as I am concerned, the most convincing evidence that M.E. is a physical process.

Because you can see a happy, healthy child from a nice family struck down as if by lightning. That makes it likely that it is a physical illness, and also helps us defend against the psychiatric view of this condition, which has caused so much harm for so long.

Also, the number of other illnesses that can closely resemble M.E. in children is very small, and exclusion is really very easy. So it is less difficult than in adults to be certain that a child has M.E.

Are there subgroups of children with M.E.?

In general, children with M.E. can be divided according to the degree of severity.

The mildly ill can still carry out 70 to 90 percent of their normal activities; the moderately ill are limited to 40 to 70 percent of normal.

And the severely ill can manage only 10 to 40 percent of normal.

Then there are the most severely affected, a very unfortunate group of patients who are bedridden for a prolonged period. They can do less than 10 percent of what is normal.

Are there different treatments for the different groups?

The general principles of managing M.E. should be the same for everyone: that you do not make the patients more ill, that you support and protect them, and try symptomatic treatment. And that you do not let them do too much.

But some people believe in advocating graded exercise therapy and cognitive behavioural therapy. The evidence for these has only been found in patients who had mild to moderate symptoms and who were mobile. They can walk to the clinic and be helped there.

There is no evidence that these techniques should be applied to the most severely affected group.

What should paediatricians pay attention to?

When treating a child with M.E., there are a lot of things you need to be aware of.

For example, the influence of the wider family. It is very, very important that patients with M.E. are believed and feel supported by their loved ones.

Very often, a sometimes rather distant family member, an ex or an aunt who lives far away - often someone who thinks they know about it -  has a strong opinion.

Such people can undermine the family's belief in the child with M.E., and that can be very disruptive.

I think it is important that the paediatrician recognises these problems and perhaps spontaneously offers to speak to such distant, sceptical family members. 

Which tests should paediatricians definitely carry out?

When a paediatrician sees a new case of M.E., they should first carry out a battery of routine tests to exclude all known or rare illnesses that can resemble M.E..

If, in addition, they follow that child for a number of years, they should consider repeating all the tests after two or three years.

Because children can develop other illnesses alongside M.E., and follow-up is of course very important to make sure that you have not made the wrong diagnosis.

But clinical assessment is probably more important than a large number of tests in this condition.

Lecture 33: M.E. & Children, Part 2

Web lecture by Dr. Nigel Speight, paediatrician, broadcast on 11th February 2014.

Are there treatments for children with M.E.?

At the present time we have no treatment that cures M.E.. Not for children and not for adults. Hopefully that will come one day. If we honestly admit that we have no curative treatment, then we really should stop using the word treatment and call it “management.” We should then talk about different strategies for managing it.

Personally, I feel that the effectiveness of cognitive behavioural therapy and graded exercise may well be exaggerated. It is certainly not a curative treatment, and the benefits may in fact be very marginal.

There is a treatment with immunoglobulins for which there is some evidence from randomised controlled studies. I think it is a great pity that these have not been repeated in recent years. In my most severe cases, I did have some therapeutic success with immunoglobulins. So that is an area for further research.

Apart from that, the management of a child with M.E. should involve a simple, supportive, sympathetic, validating and friendly approach, in which the doctor, as I have said, provides continuity and support, together with good advice throughout the illness. 

What must a child with M.E. absolutely be protected from?

Children deserve to be protected from certain things. Such as their own urge to do too much, because it is in their nature to want to get better quickly and to use every temporary remission to go beyond their limits.

We must therefore help protect them against those tendencies with advice and practical support.

In addition, of course, pressure is placed on children from many other sources, not least from their parents, their families, their doctors and the education system.

The most important role of a paediatrician may also be to protect the child from these pressures and allow them to recover at their own pace. 

How can a child with M.E. be protected from being forced to attend school?

There is always pressure from the education system to get children with M.E. to school, even when they are not well enough to attend.

I think the doctor must stand firm against the education authorities on this. They must state that the child is too ill for school.

I sometimes say that it is more problematic to have a mild form of M.E. than a more severe form, because then there are so many more options. A child who can still manage 70% of normal can still attend school a little.

The doctor therefore needs to help the school to be flexible and understanding about the child's condition, so that they do not place additional pressure on the child.

Sometimes it is easier for children to remain completely at home and receive their education there. That is an ideal method of education for sick children with M.E.. This could enable them to catch up again later, when they have recovered from their M.E..

What is the most important safeguard against a child being threatened with removal from the home?

There is a very unfortunate and regrettable tendency for some children with M.E. and their families to be subjected to a kind of persecution by child protection services, and that is extremely regrettable and painful.

The most important way of preventing this is to have a paediatrician who makes a clear diagnosis of M.E. and makes it clear to all the agencies involved that, in his or her view, M.E. is a physical illness.

This is not a psychiatric illness, and the parents are not being overprotective.

If the paediatrician communicates this clearly, the child is protected. If they cannot make this clear, it is frightening to see how many people working in education, social services and psychiatry get it wrong from that point onwards.

And I myself have been involved in thirty extremely distressing cases, all of which arose from this kind of lack of protection. 

Lecture 34: Future and Hope

Web lecture by Dr. Nigel Speight, paediatrician, broadcast on 11th February 2014.

What positive developments regarding M.E. do you see in the United Kingdom?

Let us look at where we can find hope in this country.

There needs to be more biomedical research, such as that which is currently underway. And I think it would be very good if there were more randomized controlled trials of both immunoglobulin and Rituximab, such as those taking place in Norway and England.

And there need to be more approaches aimed at finding a cause, which could lead to a treatment. So let us hope that this is a step forward.

At the moment, I think the most important thing is that someone - perhaps Parliament or the Royal Colleges - gives the medical profession more assistance in improving their management, their diagnoses, and the protection of children with M.E.

At present, this is not happening.

Are there positive initiatives elsewhere in the world?

Outside England, there are a number of other positive developments.

I was pleased to hear, when I was in Norway a few years ago, that the Norwegian Ministry of Health apologized to the M.E. community in Norway for the failings of medical policy.

And I think that the more countries internally address the problems that M.E. brings with it and encourage doctors to deal with it, the better it is. That can only be a good thing.

At the moment, there is clearly a great deal of biomedical research taking place in America, and further studies of Rituximab are underway in Norway.

I think finding a cure for M.E. is the simplest way to break through all the controversy surrounding M.E. and the ridicule of M.E. patients. Because then the medical profession will accept M.E. as a medical condition.

And hopefully that day will come within five to ten years.

Do you think the real cause of M.E. will ever be found, and if so, when?

I am only an ordinary doctor; I am not a great scientist, so I do not know.

But hopefully we will make major progress over the next five to ten years.

Possibly we will not find one cause, but different subgroups of M.E. Some with an autoimmune cause and some with a more infectious origin, which ultimately nevertheless lead to the same disease.

But what is really needed is much more research and funding, and there needs to be much less emphasis on psychiatric research. 

Chat: Questions and Answers - following Colleges 28, 29 and 30

Following the publication of Lectures 28, 29 and 30 by the English paediatrician Dr. Nigel Speight, a chat session with him was held on Friday, 24th January 2014.

The questions and answers are below.

Q: How young is the youngest known M.E. patient?

A: That is an interesting question. I have two patients who became ill when they were about 18 months old. I saw one of them around the age of 5 and the other at the age of 14. But if I approach the history carefully, I think I can safely say that the M.E. began that young.

I have had several other patients who developed M.E. when they were younger than 5. But this is fairly unusual.

Q: Are the mothers of children with M.E. also often ill?

A: Yes, there is definitely a tendency for M.E. to occur throughout a family, and I have seen several families in which more than one family member was ill, often the mother.

Q: Do you think that in those cases the mother transmitted it to the child? Or do you think it had something to do with the environment?

A: I am not an expert in that area. One explanation says that the mother passes a genetic vulnerability on to the child, and that is the explanation I prefer.

The cases I saw did not seem to fit the hypothesis of an environmental susceptibility, because I usually see different family members develop "their" M.E. with long periods of time between them.

Q: How do you know that it began at 18 months? How do you recognise the illness in such a young child?

A: The child who was 5 when I saw him definitely had M.E. at that time. The parents indicated that, even as a toddler, he had no energy following a nasty viral infection when he was 18 months old.

M.E. is a clinical diagnosis, and this was my clinical judgement regarding its onset.

Q: How does M.E. manifest itself in a child? Overtired? I find it difficult to get an idea of that.

A: My experience is that M.E. in children is broadly the same as in adults. There are a few small differences.

As the illness presents itself, by definition they all suffer from fatigue and exhaustion, but children more often suffer more from muscle pain, headaches, and worsening of everything after exertion with delayed recovery.

I was surprised in a study I did that 60% had a gradual onset. 

Q: How are those young children treated then? Psychologically? Medication?

A: No, I would not treat M.E. "psychologically", any more than I would rheumatoid arthritis.

M.E. is almost certainly and primarily ORGANIC, in other words, a physical illness. The whole field has already been hijacked by psychiatry for far too long.

I am further inclined to say that nothing makes young people and their families angrier than being treated with disbelief.

Of course, I would refer a patient with M.E. or RA with obvious SECONDARY psychological problems to a nice psychiatrist who believes in M.E.

Q: Is exercise intolerance a specific M.E. symptom, or does it also occur in other illnesses?

A: Good question. My opinion, for what it is worth, is that severe exercise intolerance:

a) is a fundamental symptom of M.E., and

b) is something that very few other childhood illnesses have as a symptom.

The picture can, however, be more complicated in adults because of Multiple Sclerosis, malignant disease, chemotherapy, etc.

Q: Do you think there is a connection with early compulsory vaccinations against childhood diseases?

A: As far as vaccinations are concerned (which are not compulsory in the United Kingdom), I have certainly encountered a few cases following an HPV vaccination, but a doctor who makes these kinds of remarks can get into trouble with the government!

Q: Is the paediatrician alone in his view of the management of M.E., or is there broad support for it?

A: (A paediatrician and a GP are two different things in our country.) As a paediatrician, I have become convinced that a good paediatrician or a GP (who both believe in the reality of M.E.) is the appropriate person to manage M.E.

In severe cases, more help from other disciplines may be necessary, but in general I have come to distrust the "multidisciplinary approach", because very often one of those disciplines ends up upsetting the child or the family.

In the vast majority of cases, I do not see the need to involve a physiotherapist, occupational therapist or psychotherapist.

The best help I have received was from a dietitian, who helped me with tube feeding in severe cases and also with diets for the migraine that can accompany the illness. 

Q: I thought it was a pity that you kept talking about fatigue instead of exercise tolerance. What was the reason for that?

A: I usually use "exercise intolerance" for cardiorespiratory symptoms during exertion. 

Q: I heard in Flanders (Belgium) about a bowel cleanse, supplemented with an IV drip; a 15-year-old girl feels considerably better because of this.

A: I have heard of a case involving an adult in Australia whose leaky gut syndrome was cured by a faecal flora transplantation.

That is quite a drastic measure, which I have never had to consider in my cases. It was probably an additional complication and not a core symptom of M.E..

Q: According to many scientists, a leaky gut is one of the main symptoms of M.E. Do you disagree with them, then?

A: I encounter many children with M.E. who do not appear to have any problems in this area.

But many things may be different in adults, particularly at the most severe ends of the spectrum.

Q: What medication is given then?

A: In severe cases with "pain all over the body", I have tried amitriptyline and carbamazepine.

Because so many patients also suffer from migraine (60% of my cases), I often prescribed pizotifen as a prophylactic for this.

I have also occasionally used Ritalin for brain fog, with some success, and two experienced paediatricians I know have done so as well.

Certainly worth a study, if only the field of research were not so dominated by the psychological approach!

I would also like to mention that I prescribed immunoglobulin to all of my most severe cases, and I think renewed research should be carried out into this form of treatment.

Three randomized controlled studies confirm that this can work well.

There are two known severe and long-term cases in Norway, both of whom have improved considerably after using immunoglobulin over the past two years. 

Q: Is attention also paid to the adrenal glands, to hormones?

A: There is research evidence that the adrenal gland and thyroid function somewhat less well.

I have no personal experience with hormone therapy, apart from the occasion when I used fludrocortisone for orthostatic hypotension.

The second Q&A chat, held Friday, 31st January 2014, following Lectures 31 and 32.

Q: Dr. Speight, what do you think about Rituximab?

A: I am cautiously optimistic, and of course new studies need to be carried out as soon as possible. It is possible that the Norwegian study involved an abnormal sample of “autoimmune M.E.”

Q: What do you mean by an abnormal sample of “autoimmune M.E.”?

A: Well, only fifteen patients received Rituximab, and ten of them improved. Those ten may have had a type of autoimmune disease that very closely resembled M.E., and future groups of patients may have a different variant of the disease that does not respond to Rituximab.

Q: Can a viral infection be excluded in young children by means of blood tests?

A: Sometimes, in an acute case, you can demonstrate a recent viral infection through a rise in antibodies.

I once had a girl with a demonstrable Coxsackie B infection that developed into severe M.E.

But more than half of children with M.E. have a more gradual or subacute form, and you often do not see them at the beginning of their illness.

Q: You talk about clinical diagnoses because there are no tests to demonstrate M.E.. But which tests do you carry out to exclude things and diseases?

A: The tests include routine haematological and biochemical tests, and tests for thyroid function, inflammatory markers, coeliac disease and viruses. Possibly also a Lyme test.

Q: But Lyme tests aren't foolproof, are they?

A: I agree that Lyme tests are very variable and controversial, and as far as I know, in later stages of the disease the test can be negative.

Q: In the interview and in the seminars, you say that children could get better if they had been in a good environment. Did those children really get better? Or were they only able to function better again?

A: Many of my children got completely better.

One of my favourite patients, who was severely ill and received immunoglobulin, has since climbed each of the three highest mountains in England, Wales and Scotland within 24 hours and has had no relapse from doing so.

It is not the “good environment” that cures them, but the absence of a bad “environment” or a harmful regime that enables them to recover spontaneously.

I do not take the credit myself when my patients recover either. I have never claimed to be able to cure M.E..

Q: So time and the absence of harmful stress can sometimes make the difference.

A: Absolutely.

Q: That's fantastic! But in this way you prevented them from becoming more ill. Do you think these recoveries occur more often in children?

A: Yes, I think children in general have a slightly greater chance of recovering completely than adults.

Q: Does Isoprinosine work like an immunoglobulin?

A: I'm sorry, I don't know.

Q: I have had the “pleasure” of going through the Lyme process... basically, if they don't find it, that is no guarantee that you aren't infected.

A: Yes, traditional doctors say that you cannot have Lyme if the tests are negative, but the Lyme specialists say that they are wrong.

Q: Has education been adapted to accommodate children with M.E.? Or is school attendance no longer possible?

A: Mild cases (those still functioning at 70–90%) can go to school, but they should not do sports.

Moderate cases (those functioning at 40–70%) can occasionally go to school, but unfortunately there are very few schools where part-time attendance is tolerated.

Severe and very severe cases (those functioning at only 5-40%) have no choice at all.

With regard to schooling options, I sometimes say that it is easier to have a severe form of M.E. than a moderate form, because then you have no choice.

Q: You said that M.E. is a clinical syndrome and not a clearly defined disease. Do you mean that many different diseases can ultimately cause M.E.?

A: I don't think anyone has an answer to this.

Some say that M.E. (the syndrome) is the final outcome of many different disease processes. 

Others believe that there is mainly one cause, such as a post-infectious illness, or a chronic infection.

(Myalgic Encephalomyelitis is also Enteroviral Encephalomyelitis, and is named after an 'acute onset' neurological disease)

That is why I was so cautious about Rituximab.

Q: Among adults, most patients are women. Is that also the case among children with M.E.?

A: Yes, the majority, but probably 60-70%.

Teenage boys can be very difficult patients: completely denying it, rebelling and refusing to go to support groups, and worst of all, causing themselves more harm by fighting against their illness and their parents.

Some behave exemplarily.

Q: What do you think about methylation? Do you think taking supplements to support methylation could be beneficial? Or perhaps detoxification would be better?

A: Sorry, I don't have an opinion on that.

I am always prepared to try things that my families recommend, provided they seem reasonably logical, harmless and inexpensive.

At one point I half-believed in magnetic wristbands!

Q: You say that it has some usefulness to regard CFS and M.E. as the same thing. But that is precisely what patients all over the world are trying to get rid of. Could you explain that again?

A: My compromise is that I call it "ME/CFS" when I write to doctors, call it M.E. when speaking to patients and teachers, and do not call all the other fatiguing conditions, that do not involve exercise intolerance M.E.

(Another two-faced doctor, and they do not mean the same thing)

I think it is a bigger problem in adults with M.E., because in adults there are more possibilities for 'fatigue complaints' that resemble M.E.

I would very happily abolish the term CFS.

(Oh, how nice of him!)

Q: What do you think about medical students who want to learn more about M.E.? What would be the best things for them to learn about?

A: I think they should be presented with real, clear cases as clinical evidence, and this should be followed by a general discussion.

No psychiatrist should even be allowed into such lessons!

Cases involving children are particularly convincing, and an articulate young M.E. patient is really ideal.

Q: No psychiatrists? And what should they do for a living then?

A: As far as I can see, they could help some adults and children who genuinely need their help!

Q: Has understanding of children with M.E. increased?

A: In Great Britain, I still very often hear doctors say that they do not believe in it.

I also see newly qualified young paediatricians who say that they do not have enough confidence to make the diagnosis and have to refer to specialist M.E. services (which are usually dominated by psychiatrists).

Despite the NICE guidelines, I have the impression that understanding is not increasing.

Q: There is a project underway in the Netherlands in which two or three third-year medical students interview a patient at home. Do you think that is a good start?

A: Excellent, but how are we going to teach the older doctors?

Final international Q&A, dated Friday 14th February, 2014

Q: I am the mother of two children with M.E., a boy of 14 who has been ill for 2½ years and a girl of 12 who has been ill for four years. My question:

What, in your opinion, is the long-term outlook for these children? Do most get better, or do most remain ill when they reach adulthood?

A: Thank you, I would like to express my sympathy. In general, of a group that I followed, one third of the cases showed good improvement within 5–6 years. It is very unpredictable, but generally the prognosis is better for the milder cases.

Q: What about a child who started with a milder form of the illness and whose condition gets progressively worse as they get older? Isn't the expectation that it gets better with time?

A: I'm afraid that sometimes does happen, without it being anyone's fault. Of course, sometimes it happens because of medical mismanagement (being encouraged/forced to do too much).

Q: No medical mismanagement, a low C3 level but otherwise a normal blood count, although the father has SLE.

A: This sounds like bad luck. The other common reason for deterioration is a new viral infection.

Q: Sounds like a plausible explanation. Is there anything we can do to tackle such viral infections? Our daughter is now 23 and has been ill since she was three.

A: The severe cases are protected from exposure to other people's viruses because they remain at home. I had a mother who was convinced that the immunoglobulins I gave her son protected him against viral infections (which his brothers brought home from school).

Q: Is it possible for a child's health to deteriorate over the years because they are not being treated?

A: There is no treatment, and I don't see many patients deteriorate from benign neglect.

Q: Have tests been added over the years, or have some proved obsolete?

A: Last week I heard an interesting presentation by Dr. Mark Van Ness from California. He presented objective scientific evidence of the deterioration in energy after exertion and other symptoms that could form the basis of a diagnostic test.

Q: Is there a difference in symptoms between boys and girls? I have read that girls develop M.E. more often and that they have worse/different symptoms?

A: Not really. I have noticed that adolescent boys are generally worse patients than girls. Many of them resist the condition and are in denial. They do not like going to peer-support groups. (There are exceptions, of course.)

Q: But what are the statistics for girls/boys versus women/men?

A: In adults I believe it is something like 3:1; in my group of children it was closer to 3:2 (i.e. girls/boys).

Q: The bodies of girls and women have to open themselves up to foreign DNA in order to become pregnant. Could that be a reason why the immune systems of girls and women are more vulnerable?

A: A good question! I don't know the answer.

Q: Or could the drop in energy that goes each month towards the ability to create a new human being come at the expense of the energy going to the immune system? (I realise I'm putting this badly... damn fog.)

A: Many girls develop M.E. before puberty.

Q: That's why I asked - before then, is it equally distributed between the sexes?

[The document records no separate answer here before moving to the next question.]

Q: Do you recommend "treatments" such as vitamin B12, vitamin C, vitamin D, melatonin, 5HTP, omega-3 oils, etc., to reduce symptoms, or is it pointless to give a child all these pills? My children take them all.

A: My approach was to go along with parents' suggestions for a sensible trial period. So some received B12, etc. I used Melatonin a lot. Some patients have taught me that L-Glutamine helps with nausea.

Q: My 12-year-old daughter often wants to do things such as playing with a friend, despite deteriorating as a result. How can we manage this properly? She often says that "it was worth it" when she has to spend days recovering from doing something enjoyable. Do you have any ideas about this?

A: I think that is very difficult. I have often made mistakes by being too accommodating, and given advice based on "like it or not." Perhaps I could have provided a little more guidance, but ultimately it is still the patient's life.

I would gently explain the connection between, for example, a small relapse and a preceding pop concert/camping weekend, while at the same time trying not to sound like "I told you so."

The most important thing is that they don't do so much that it causes a major relapse.

Q: Do you think Karina's doctors will change their minds because of the petition?

A: Karina's doctors appear convinced that they are right and will probably not agree. Nevertheless, the court/judge should be more open to logic and an appeal to natural justice.

Q: If you manage to get her out, you'll have lifelong fans. They've been holding her for a year now, and are obviously failing.

[No separate answer is recorded before the next question.]

Q: I have read that the "extent to which the mother focuses on the symptoms" can influence a child's prognosis (FITNET study). Can you say anything about this? As a mother, it feels very unfair!

A: And presumably they mean a negative influence. It sounds to me like nonsensical psychobabble.

Q: Then we agree! A doctor who says psychobabble...

[The discussion then moves to the next question.]

Q: A rheumatologist proposed immunoglobulin treatment for my daughter. A specialist thought that it was unsafe. My daughter has a low IgG-1 level. Would immunoglobulins be a good or safe idea given that she is very susceptible to infections and often has a low-grade fever?

A: I would trust the rheumatologist. When doctors say something is "unsafe" but give no explanation, it usually means that they personally don't feel like giving it.

They also think, "If I give this to this patient, all the others will want it too." Then they think about the extra work!

If she is susceptible to infections, immunoglobulins may be worth trying. I think I told you last time about the Norwegian girl who showed a remarkable response to immunoglobulins.

Q: A girl who is now 15 was slowly but surely improving a year ago. Then she spent four weeks in rehabilitation, with the focus on increased activity and motivation. One or two months later, it dawned on us that she was getting worse. Three-quarters of a year later she was even worse, and now she is more or less bedridden. I believe there is a connection. Do you generally agree?

A: Agreed. That is also our experience with exercise regimes. Of course I agree! I have heard that story so many times.

I wish someone would successfully prosecute those doctors who made her worse for the harm they caused.

Q: Frightening. We thought the doctor, a paediatric neurologist, knew what he was doing when he sent her there. I know of more cases like this. It is also the only thing they have to offer children under 18 in this country. They have mixed M.E. with CFS and learned from the Wessely school, it seems. I wish we had known then what we know now... Thank you Dr. Speight! We will quote you.

Q: How can we reverse that negative course? Apart from her staying in bed...

A: I have heard from many very sensible parents that they too believed that doctors knew what they were doing, to the detriment of their children.

If only we could reclaim the word “graded” in “graded exercise treatment” and have it refer to improvement or deterioration, so that when a patient deteriorates we would let them take it easy.

Q: That neurologist was no novice and was regarded as one of the better ones.

A: Don't forget that M.E. is a condition that can drive even good doctors crazy.

Q: But all doctors who have dealt with M.E. patients for a while should think three times before referring them to places where GET is done.

A: I agree. I have never recommended that.

I always say that my system of very gentle pacing is like gentle GET, and no referral is necessary!

Q: Have any of your patients ever reported pressure in the brain or strange tremors after using antibiotics or antivirals?

A: Not in so many words. Do you mean a headache?

Q: No, more like a balloon being inflated inside your head. If the pressure remains for too long, it causes a headache. And immediately afterwards I had a severe headache, together with a month of nausea and dizziness and a 40-degree fever.

[No separate answer is recorded before the next question.]

Q: Do long-term courses of antibiotics have a role in the treatment of young people with M.E.? I am referring to Mycoplasma pneumoniae and Chlamydia pneumoniae infections, with a positive blood test.

A: I think so.

The work of Garth Nicolson in the USA justifies a trial of broad-spectrum antibiotics for possible atypical infections, such as atypical Mycoplasma - I assume that is what you meant.

Also, some doctors in the USA use antiviral drugs such as ganciclovir (Dr. Montoya).

Q: Do you have patients who contracted swine flu in 2009 (the illness itself, not the vaccine against it)? We think that was one of the triggers in my children.

A: I myself have not seen such cases, because since my retirement I have not been permanently stationed anywhere.

Nevertheless, I think that swine flu is a good pathogen for triggering M.E.

Q: Can a weakened immune system encourage co-infections? Can long-term treatment with antibiotics make M.E. worse?

A: I would say:

1) Possibly, and

2) Unlikely.

Although I believe that when someone treats tertiary Lyme with antibiotics, this can cause the patient to feel worse due to the release of waste products from spirochetes when those bacteria are killed.

That can be an encouraging sign.

And, of course, Lyme can imitate M.E.

Q: Would it therefore make sense to test M.E. patients regularly for co-infections and diseases other than M.E.?

A: Unfortunately, those are very specialised tests.

It is much easier simply to try broad-spectrum antibiotics empirically.

I knew a creative female GP, a family doctor, who prescribed doxycycline for a young man's M.E., but pretended it was for his acne!

(Unfortunately, it didn't help.)

Q: What about vaccines as triggers (the second suspect in my daughter's case, six months after the swine flu)? Once you have developed M.E., should you completely avoid vaccines?

A: Vaccines are very widely regarded as a trigger.

Governments do not like investigating that and do not like hearing about it either.

Imagine if they were held responsible.

Q: We tried to report it (the vaccine) to the government, but they refused to accept that there could be a connection. At least we tried to report it...

A: As I said. We had a doctor in Great Britain who suggested a link between MMR and autism.

His career is ruined.

Q: Does genetic susceptibility play a role in developing M.E.?

A: Almost certainly.

There are large family clusters in which each member developed M.E. at different times.

(I have just diagnosed several patients with Ehlers-Danlos type 3, and I am still uncertain about the significance of that)