How to manage transfers to the hospital for severe ME/CFS patient?

[MartinK]

Hi all, I have several important examinations at the hospital. Is there a small chance I could get IVIG and I have to undergo these trips also because of financial support from the insurance company.

To make a long story short - I'm very severe at the moment, 24 hours in bed and the last trip to the hospital by ambulance gave me major PEM, even though it was lying down.
Big temperature changes are also to blame, because it's freezing outside and I'm intolerant of extreme temperatures.

I'm thinking how to handle it. Almost no PEM shielder works for me.

I can think of doing at least 1.5l IV saline + 2g IV magnesium + lot of BCAA and CoQ10 after passing the tests to limit crash?

What do you think? Does anyone have experience with successful transfers to the hospital by ambulance?

thx, Martin

 

[helen1]

@MartinK
I wonder if @Janet Dafoe could give you some advice. She’s had to get her severely ill son to and from the hospital several times. Pretty sure benzos were helpful in his case.

 

[MartinK]

@helen1 Unfortunately the benzos has lost its effect for me, as has Pregabalin for example.
Hope @Janet Dafoe have some more advice.
Thank you so much! ;-)

 

[BrightCandle]

I have no success stories to give, I carefully planned such a trip with the NHS in 2020 and they messed up every stage of it and left me with a horrific crash as a result. I see no practical way to make a healthcare system that refuses to accept my illness into treating me with basic respect, decency and not making me worse.

 

[lenora]

I agree with trying to contact Janet Dafoe at this address. She is on the Board of Directors.

Her son, Whitney Dafoe, father's name is Ron Davis and works for the Open Medicine Foundation doing research for our illness. Through him (I believe) Whitney was prescribed only a very small amount of a drug and I'm sorry, but I don't remember the name of it.

Try Janet Dafoe because Whitney is no longer on Phoenix, although he does check in from time to time. Does anyone remember where he went.....? Twitter, Instagram? Sorry, but that would be your best avenue for help. It seems that it made everything easier for him. Yours, Lenora

 

[Judee]

Does anyone remember where he went.....?

I found his website at least.

https://www.whitneydafoe.com/mecfs/

 

[lenora]

Hey @Judee.....You're such a doll and a huge help. I just knew that you would be the one to come up with an answer.

How are you and where will you be spending Xmas? (Alone is fine, too. I understand but have a better 2023...it's coming. Yours, Lenora