• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Natalie Boulton's ME presentation "A Parent’s Perspective; ‘Lost Voices’ as the years past"

Dolphin

Senior Member
Messages
17,567
Full title: Natalie Boulton's ME presentation "A Parent’s Perspective; ‘Lost Voices’ as the years past" at June 6 Hope 4 ME & Fibro NI conference

She made the book "Lost Voices from a Hidden Illness" and then the film Voices from the Shadows with her son Josh.


http://bit.ly/1S5WI5G

i.e.

<http://voicesfromtheshadowsfilm.co.uk/2016/presentation-for-belfast-6th-june-2016/>


Extracts:


----

I find it worrying that many, once they have another diagnosis such as POTs, are told that they no longer have ME/CFS and should get the ME diagnosis removed from their notes. This is despite the fact that dysautonomia and POTS in particular, is one of the symptoms included in internationally accepted definitions of ME.
----

One of my friends has a daughter who is ill with severe ME. In her medical notes it was recorded, less than three years ago, that the hospital was advised by the influential regional CFS paediatrician that; “N.G. [naso-gastric] tube feeding is not part of the spectrum of even severe CFS”. Alternative diagnoses of an eating disorder, or a mental health problem were therefore suggested, even though the child had not even been seen by that paediatrician, at that point. The child had originally been admitted to hospital with a mistaken diagnosis of idiopathic chronic pain syndrome – for which the treatment was intensive physiotherapy. This had caused her to deteriorate disastrously, to the point of needing tube feeding and experiencing intermittent paralysis in her legs and arms. Further problems arose later when the same paediatrician, (having by then seen the child briefly), informed the hospital that paralysis is not part of the clinical presentation of CFS/ME, and gave a new diagnosis of Disassociation/conversion disorder. It was also advised that children do better if the anxiety, expected to develop in a long term condition, is treated. I think many people would question treatment on the basis of such an assumption. A few months later while very, very severely ill, the child was subjected to a lengthy interview by social services who were concerned whether, if such severe symptoms exclude a diagnosis of ME, could her parents be making her ill? Within days of making a superhuman effort to answer all their questions and allay their concerns, the child lost her ability to use her voice.
 

Seven7

Seven
Messages
3,444
Location
USA
Well some of us do get paralyzed. If the energy is totally gone. What do they think will happen?