The conversations with them have made me very depressed, Its hard to cope.
the lowest point for me is when professor Towers said to me that Dr Judy Mikovits is no hero and has destroyed MECFS forever and that no good researcher will want to work on MECFS again.
and being told by Dr Myra McClure that she believed im not XMRV positive and that its safe to have a baby without it getting XMRV from me is also another low point. It's my own fault, i called them up because I hoped they would understand us & help us.
There is much more said, I cant write it because I'm scared, the UK sometimes feels like its not a place you have a free voice - I feel like I will get in trouble.
They took all my hope away from me, after speaking to dr McClure I felt suicidal.
Since I spoke to professor Towers - im not able to sleep or eat properly, I know they read these forums they told me, so please can you just help us, the damage thats been done to so many, the unimaginable neglect, please have a heart and help us.
Please Dr Towers I no you read all this. Please.
good night.
Kate.
the lowest point for me is when professor Towers said to me that Dr Judy Mikovits is no hero and has destroyed MECFS forever and that no good researcher will want to work on MECFS again.
and being told by Dr Myra McClure that she believed im not XMRV positive and that its safe to have a baby without it getting XMRV from me is also another low point. It's my own fault, i called them up because I hoped they would understand us & help us.
There is much more said, I cant write it because I'm scared, the UK sometimes feels like its not a place you have a free voice - I feel like I will get in trouble.
They took all my hope away from me, after speaking to dr McClure I felt suicidal.
Since I spoke to professor Towers - im not able to sleep or eat properly, I know they read these forums they told me, so please can you just help us, the damage thats been done to so many, the unimaginable neglect, please have a heart and help us.
Please Dr Towers I no you read all this. Please.
good night.
Kate.
Kate, I really feel your pain. Being sick with this horrid disease is enough of a rollercoaster ride. All the recent reasearch shenanigans sure haven't helped with that!
I agree with Riley that there are a lot of reasons to retain hope (and well listed Riley!). I would like to add one more :
Retroviral involvement in ME/CFS would really explain nearly everything about this disease. We know that this faimily of retroviruses is known for causing problems with the immune and neurological systems. Sound very familiar. I'm sorry, the theory that XMRV is a major player is just too good, it makes so much sense.
The insensitivity of these neagative researchers only goes to prove that they have no clue when it comes to this disease.
And one more thing. Don't let the bastards get you down!!
take care, ness