Thank you so much for your article. I have had ME for 27 years and my 36 year old daughter got it 4 years ago. I am firmly of the belief that our particular illness is mitochrondrial as my grandmother was bedridden more or less from the age of 40, my mother also had a mild version from the same age as did I.
I have written to newspapers begging journalists to investigate the link between Health Insurance Companies who do not pay out for mental illness and the psychiatrists paid by them to change ME to CFS under 'Neurasthenia' (an imaginary illness).
I believe there is now a tribunal in London regarding release of the data from the latest PACE trial in which (always the same psychiatrists) claim that GET and CBT work but do not want anyone to see it. Progress. ~Posted by: RosemaryEveleigh, May 4, 2016
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Doctors Don't Know How to Treat CFS/ME
Re: ME/CFS in Children
Since doctors don't even believe in CFS/ME, and they don't know how to treat CFS/ME, we simply quit going to the doctor. The good news, however, is that we have found that, with sufficient supplements, my child's condition has significantly improved. It appears that her body just isn't efficient at making the many conversions that are required, and providing extra essential nutrients, and providing them in bioavailable or activated forms, helps to bridge the gaps and get things working again. It's not a cure, but it's the best thing available until a cure comes along.
It's expensive. Health insurance doesn't cover it. It's not fun taking fifteen or twenty pills a day.
But, going from almost completely bedbound in a dark room with a blanket over your head to working a 30 hour week is absolutely incredible. And, you keep doing it, because the moment you stop, you start sliding back…
There's another important reason to NOT take your child to a doctor. Since doctors DON'T believe in CFS/ME, they often believe that the parent or the child is mentally ill, and serious violations of human rights of children with ME/CFS have been occurring all over the world, including the medical kidnapping of children, and removal of custody, and locking children in hospitals where they are subjected to forced sensory exposure and exercise that worsens their condition. Medical training instructs doctors who have patient who is complaining of symptoms where there is no medical test result to confirm it, to diagnose those patients with a somatoform disorder. This often leads to such diagnosese as "conversion disorder" or "Munchausens By Proxy", etc. Taking a child with CFS/ME to a doctor can be very, very dangerous. Engaging with school officials can be equally dangerous, so home schooling may be the preferred approach in these cases. It may be best to avoid hospitals and schools altogether, until your child is "of age", unless symptoms which a doctor can actually measure with medical tests appear.
One final problem — a doctor who does not understand your disorder is likely to do the wrong thing in attempting to treat it. An example is doctors who recommend exercise for ME. Such misguided efforts can make the condition worse, and can, in rare cases, cause fatalities. ~Posted by: dfwmom, May 13, 2016