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

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By Jane Colby


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.
Source: Jane Colby. False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME). Argument and Critique. July 2014.

Note: Jane Colby is the Executive Director of Tymes Trust. jane.colby@tymestrust.org

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2 thoughts on “False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)”

  1. dfwmom says:

    If you look at the history of medicine, you will find such “experts” as those who explained that autism was caused by “refrigerator” moms.
    These are the type of “experts” who blame a parent for child abuse, when the parent makes the choice to stop a sham treatment like CBT and GET for a very real disease like M.E.

    This article is incorrect in one aspect. Withdrawing a child from a treatment protocol of CBT and GET is no more likely to cause a “worsening of the disease” than SUBJECTING a child to CBT and GET, and subjecting a patient to these treatments may be MORE likely to cause a worsening of the condition. Patients with M.E. have an abnormal longer two day recovery rate from exercise. If a patient is involuntarily subjected to forced exercise, daily, then the child cannot recover in time for the next session, causing a rapid and dangerous worsening of the conditions. Autopsies on Sophia Mirza, after she DIED from M.E. showed she had severe inflammation of the spinal cord. Sophia was forced into psychiatric care, when history shows her problem was clearly organic in nature, and was forced to undergo CBT and GET involuntarily. Many believe that the GET caused or hastened her death. M.E. is a serious MEDICAL condition, and forcing the patient to exercise can, in some patients, cause that condition to WORSEN.

    Parents, who are much more in tune with their children, can detect the danger signals that doctors miss, and that is why parents, who want more than anyone for their child’s condition to improve, make a choice, usually with the child’s participation in the decision-making process, as to whether to continue to undergo treatments that, not only are not making the patient better, but are actually making the patient worse.

    There is a solution to the rampant violation of human rights against patients, children and parents by the medical community. Laws need to be changed. Pass laws that no patient may remain under the care of a doctor and institution that has called protective services. The patient must be transferred to a comparable NEUTRAL THIRD PARTY doctor/institution, as a matter of professional ethics. Also, no hospital can refuse the request of a parent to transfer a child to the care of a comparable doctor or hospital, and such a request CANNOT BE USED AS A GROUNDS FOR CALLING CPS. Such laws would help to eliminate the obvious conflicts of interest that can occur, and help to preserve the rights of parents and children to choose their care provider, and to choose NOT to remain in the care of a doctor or institution that has LOST THEIR TRUST.

    CBT is unlikely to kill anyone, and may be helpful (or may not), but should a society really do something as extreme as violating the human rights of a patient, a child, a parent simply to force them to TALK to someone? That’s not medical care. That’s a violation of Free Speech and Self-Determination. The act of violating a person’s rights should be reserved for the most straightforward (because there should be no reasonable doubts when we violate human rights) and life-threatening emergencies.

  2. dfwmom says:

    Many of the children whose rights are violated by the medical community, such as Justina Pelletier, are old enough to understand their situations. They are old enough to have a say in their medical care, old enough to participate in their medical care, to such an extent as requesting a different doctor, requesting a second opinion, and participating in a decision concerning to conflicting diagnoses and treatment plans. I believe we should pass laws protecting the rights of children to participate to some extent in medical decisions concerning. Forcing medical treatment on a person involuntarily is a violation of the body and the person that is analogous to rape, and which can cause the same degree of emotional trauma. We should have extensive protections in place to ensure that children are protected from abuse of power in the medical community.

    We should listen to what Justina Pelletier has to say about her experience with doctors who wanted to “help” her. And, while we do so, we should note that her doctors did not “cure” her of her very real disease in the year that they had her locked away in a psych ward, despite their claims that her illness was all in her head.

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