Dear ME Association
Thought you may like to view our son Boris try and explain in his own words (as you can tell) some of his ME symptoms. He thinks he's a film star now!!
Please feel free to put it on Facebook or any forums where you think it could help.
Our family have three out of four children with ME/CFS, two of whom have been ill since age of 8 and Boris who was diagnosed age 6yrs. I absolutely feel the xmrv link will pan out very soon.
Regards S Cox
Thanks for making this video Boris.
What an incredible chap you are.
Hi Boris (06)
I love your video. I’m sorry you can’t play as much as you’d like. I have the same problem. I hope we both get better soon!
Love to you and Harry
from Crispy (60)
I am sorry your children are “tired” but I have to point out that in my opinion it is highly doubtful these children have ME. The extreme pain, neurological and cardiac symptoms that many patients with genuine ME suffer would not be recognised in Boris – “bored and tired”. It is vital that a test is established as soon as possible to prevent doctors misdiagnosing patients with very marginal vague sysmptoms as having ME. Especially now that people diagnosed will believe that they have a retrovirus XMRV.
Well Done Boris, you explained about how ME is for you so well and everyone is so proud you are such a brave boy.
I hope you and everyone else who is unwell with ME can get better soon.
Carole.x
I am sorry, but I strongly disagree with Kermit Frogsquire!
This little boy is exactly that, a little boy! Of course he is bored! I’m sure we all are! He is a child! Just because he can’t go in to graphic detail about his symptoms, does not mean that he is not ill! What’s more, you have no right to assume such a thing! :@
That is fine to disagree Danielle.
Whilst my comment may have caused controversy I think to diagnose ME on the basis of fatigue and none of the known objective signs is reckless. It underlines everything that is wrong about the way people with ME are treated. Several things ring alam bells with the video, one is the treatment that is described (classic of Esther Crawley), the other is the diagnosis of several children in the house. Esther Crawley has stated that she diagnoses 4.7% of kids with ME, a ridiculous statement. Furthermore statistically a diagnosis of ME is highly unlikely in a 6 year old. And as I said before, yes it is my presumption given my experience of the symptoms, that people with ME are usually too ill to describe being bored. Boris is ill, he needs properly investigating, not a label, yes there is a possibility he has M.E., but such a diagnosis needs to be taken as seriously as diagnosing someone with terminal cancer or HIV, we must not let kids be subjected to easy throw away diagnoses. For Boris’ sake, we need to be concerned about getting him really rigorously diagnosed, he may well have a treatable condition. If he has ME, my heart obviously goes out to him.