False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME) by Jane Colby

[Dolphin]

New open-access, peer-reviewed paper:
http://www.argumentcritique.com/publications.html
http://www.argumentcritique.com/uploads/1/0/3/1/10317653/colby_j.pdf

False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)

By Jane Colby
Executive Director of Tymes Trust
jane.colby@tymestrust.org
www.tymestrust.org

July, 2014

Abstract

There is no cure for ME (Myalgic Encephalomyelitis). In its absence, management regimes are prescribed, typically based on cognitive behavioural therapy (CBT) and graded exercise therapy (GET).

In the case of children this may involve the application of Child Protection powers to enforce treatment.

NICE confirms that patients may withdraw from treatment without effects on future care, but parents who decline, or withdraw children from, management regimes, which may have worsened their illness, can find themselves facing investigation for child abuse or neglect, or have their child forcibly confined to a psychiatric unit.

Tymes Trust has advised 121 families facing suspicion/investigation. To date, none of these families has been found to be at fault.

Subsuming ME under the heterogeneous term Chronic Fatigue Syndrome (CFS) has confounded research and treatment and led to disbelief over its severity and chronicity.

As evidence points to persistent viral infection, recommendations have been made to separate ME from CFS.

International consensus criteria for ME emphasise post-exertional deterioration as distinct from fatigue.

If the child with ME deteriorates under management regimes, re-diagnosis with a psychiatric condition can mask treatment failure and lead to blame attaching to the parent.

A more constructive redeployment of resources away from Child Protection investigations into appropriate practical support for these seriously unwell children, should be developed.

Key words
ME, CFS, chronic fatigue syndrome, Myalgic Encephalomyelitis, child abuse, neglect, child
protection

 

[Dolphin]

Some extracts:

"Using the Workwell 2 day testing protocol, Van Ness (2014) has clearly demonstrated the objective reality of the 'post exertional amplification of symptoms in ME patients; a hallmark symptom of ME. This damage to the aerobic energy system means that it is utterly counter productive to try to use aerobic exercise, such as graded exercise therapy, to improve health in these patients.'"

"In The Doctor’s Guide to ME in Children and Young People, Franklin (2003) stresses the importance of rest for severely ill children, cautioning that 'Forced exercise, particularly any exercise producing a prolonged aftereffect, can be counter productive and can be damaging. It can be instrumental in causing a deterioration, despite reports to the contrary,' (2003:8)." (Franklin = Dr Alan Franklin (RIP), paediatrician)

Many families are also shocked to see what has been written about them when they access their child's school and/or medical records, as is their right. Dr Speight, already known for his work on childhood asthma (the existence of which, like ME was once denied) commenting on these inappropriate and heavyhanded Child Protection investigations and the application of inappropriate treatments, stated: “This is child abuse by professionals,” (Speight, 2013b).

The collective attack upon these families, involving such extreme and traumatic measures, is clearly counterproductive in cases of genuine ME. From our Advice Line Records we can see that three common misperceptions appear to be driving this trajectory of stigmatisation by professionals:

1. The misperception that ME is not a physical disease, but a mental health disorder.

2. The misperception that treatments such as Graded Exercise Therapy (GET) or graded activity and Cognitive Behaviour Therapy (CBT) can always be expected either to cure, or substantially improve the condition, and certainly will do no harm.

3. The misperception that the illness is neither long lasting (chronic) nor severe.

How ironic it is that a condition with the word 'chronic' in its name should be so often confused with child abuse or neglect, with the length of the child's illness often given as *reason for suspicion*. The child has been ill for too long for this to be genuine CFS, the physician will argue. What does the word 'chronic' mean, if not long lasting? At this point many families report being given a *re-diagnosis*, as if the CFS had somehow ‘gone away’, leaving the child with some form of psychiatric illness in its wake. It would appear that these changes in diagnosis are, in effect, serving to prop up claimed CFS recovery statistics.

"Dr Dowsett wrote of her concern about inappropriate management of children's education: 'discouragement of Home Tuition, encouragement of early return to school, intervention with anti-depressant therapy and graded exercise may well leave us with a generation of young people suffering from educational deficit' (Dowsett, 1997:6)."

"Conclusion

There is no cure for ME, but the perception that there is, continues to haunt families. For many, state intrusion has impacted negatively on their ability to care for, nurse and educate their children at home during what may be a long recovery period. The inappropriate use of Child Protection powers is traumatically experienced by families as intimidation and coercion into regimens of treatment that they believe can be harmful to their children. Moreover, the substantial body of research evidence covered in this paper, supports the views of the families and the charities who have presented the families’ views over the past few decades."

 

[taniaaust1]

How ironic it is that a condition with the word 'chronic' in its name should be so often confused with child abuse or neglect, with the length of the child's illness often given as *reason for suspicion*. The child has been ill for too long for this to be genuine CFS, the physician will argue.

Yeah that is so irronic esp since the word "fatigue" in the name is paid so much attention.

Great paper.

 

[Min]

Ms Colby says: "At this point many families report being given a *re-diagnosis*, as if the CFS had somehow ‘gone away’, leaving the child with some form of psychiatric illness in its wake. It would appear that these changes in diagnosis are, in effect, serving to prop up claimed CFS recovery statistics."



The clinics doing this should be thoroughly investigated and closed down, it is scandalous. I understand they are rediagnosing the children with persistant refusal syndrome, with no change whatsoever to their myalgic encephalomyelitis symptoms.

 

[Bob]

I have been told that a certain well-known paediatric CFS specialist re-diagnoses her paediatric CFS patients with a behavioural disorder (perhaps 'persistent refusal syndrome', but I can't remember the specific details) if the patients don't respond to treatment (with CBT/GET, when she's not subjecting them to the Lightning Process).

Words fail me.

 

[Min]

Those poor children No other neurological illness is 'treated' in this shameful way.

I guess the nurses, physiotherapists and other medical staff involved in this abuse are 'just following orders' from doctors who have forgotten their oath to first do no harm.

 

[LisaGoddard]

I had my first bout of ME/CFS when I was about nine or ten years old. I'd had viral tonsillitus (perhaps an EBV infection). I can't imagine what would have happened if I had been forced to exercise. With rest, I eventually recovered and was well during my teen years and twenties. In fact, I didn't get sick again until my late 20s, when I got a nasty bout of flu.

 

[Sean]

I have been told that Esther Crawley re-diagnoses her paediatric CFS patients with a behavioural disorder ('persistent refusal syndrome'?) if the patients don't respond to treatment (with CBT/GET, when she's not subjecting them to the Lightning Process).

Words fail me.

It is a genuine scandal that she is getting away with this. Reflects extremely poorly on the overall peer review system that she can get away with it.

 

[Leopardtail]

Ms Colby says: "At this point many families report being given a *re-diagnosis*, as if the CFS had somehow ‘gone away’, leaving the child with some form of psychiatric illness in its wake. It would appear that these changes in diagnosis are, in effect, serving to prop up claimed CFS recovery statistics."



The clinics doing this should be thoroughly investigated and closed down, it is scandalous. I understand they are rediagnosing the children with persistant refusal syndrome, with no change whatsoever to their myalgic encephalomyelitis symptoms.

The Leeds CFS/ME clinic does this routinely, if they are unsuccessful, they un-diagnose.

 

[Valentijn]

My fatigue clinic undiagnosed me when they failed to help me. Instead of pervasive refusal syndrome (I guess I'm a bit too old), I got rediagnosed with "too fat to have CFS"

 

[Min]

My fatigue clinic undiagnosed me when they failed to help me. Instead of pervasive refusal syndrome (I guess I'm a bit too old), I got rediagnosed with "too fat to have CFS"

I know an elderly gentleman rediagnosed as 'too old to have M.E.' It seems the clinics will do anything to fiddle their statistics.

 

[Leopardtail]

I know an elderly gentleman rediagnosed as 'too old to have M.E.' It seems the clinics will do anything to fiddle their statistics.

where I went they gave the following diagnoses to four patients: seasonally affected disorder with diabetes and no fatigue, somatoform disorder, 'unknown neurological disorder', the fourth was 'fatigue of unknown cause' - they only had five patients with ME. They discharged #5 as 'non compliant'.

They also had rules against discussing symptoms and diagnoses - I wonder why?

 

[Leopardtail]

I know an elderly gentleman rediagnosed as 'too old to have M.E.' It seems the clinics will do anything to fiddle their statistics.

I am so pleased to here that when I am 'old & frail' my ME will miraculously heal.

 

[MeSci]

where I went they gave the following diagnoses to four patients: seasonally affected disorder with diabetes and no fatigue, somatoform disorder, 'unknown neurological disorder', the fourth was 'fatigue of unknown cause' - they only had five patients with ME. They discharged #5 as 'non compliant'.

They also had rules against discussing symptoms and diagnoses - I wonder why?

RULES? What kind of place is that?

 

[Leopardtail]

RULES? What kind of place is that?

That was the Leeds CFS/ME service, they also excluded family who tried to support patients being abused medically (the abuse being my personal opinion).

It's a hospital based (WARD-40) ME service based on CBT GET with a mainly psychiatric staffing. The leeds me network used to carry a fair bit og information, but were relentlessly harassed until they removed it, you can find limited info here. They also force patients to sign a confidentiality agreement.

 

[Min]

That was the Leeds CFS/ME service, they also excluded family who tried to support patients being abused medically (the abuse being my personal opinion).

It's a hospital based (WARD-40) ME service based on CBT GET with a mainly psychiatric staffing. The leeds me network used to carry a fair bit og information, but were relentlessly harassed until they removed it, you can find limited info here. They also force patients to sign a confidentiality agreement.

So is it possible that they know what they are doing under the pretext of 'medical treatment' is reprehensible, and do not want patients to report on this?

 

[MeSci]

They also force patients to sign a confidentiality agreement.

Good grief. Is that legal?

 

[Leopardtail]

Good grief. Is that legal?

The excuse they use is "group sessions" but the context of the agreement goes way beyond that... I suspect a good human rights lawyer could challenge it....
Being a "mental health" ward gives them far too much power

 

[Leopardtail]

So is it possible that they know what they are doing under the pretext of 'medical treatment' is reprehensible, and do not want patients to report on this?

I get they definite idea they want patients to go in blind, they definitely miss-sell they way they work.

 

[mermaid]

The Leeds CFS/ME clinic does this routinely, if they are unsuccessful, they un-diagnose.

I was in touch with someone who went there who was distraught that they reclassified her while there with MUPS (Medically Unexplained Physical Symptoms), so am interested to hear that change in diagnosis is routine.

She was v worried that it would affect her benefits applications. She was desperate to get out of the place after a few weeks, but decided to get them to believe that she would continue with their advice/treatment at home.