URGENTLY HELP NEEDED FOR SEVERE ME SUFFERER IN UK

[Berzerkerina]

Dear people,
As i posted lately i am moderate -severe and a friend of mine ( i love him but he is so severe that a relationship is not possible ) its going worse and worse in UK ( Southhamptom) .
He needs desperately a doctor who takes him seriously. He cant eat ,cant drink, he needs intraveouns saline , a mast cell stabilisator maybe ( ketitofen ) and he is willing to pay for every help he can get.
I live in Germany and i cant do anything from here, please folks in UK tell me there is a doctor there who can help a little...even if its expensive
My friend its literally dying and i contacted already the ME Association in UK , they can only say " call your GP"
wich is ridiculous because the GP doesnt prescribe him anything ....i hope you can help me.
I cant see him this way anymore

 

[Shoshana]

I am so sorry to hear about this difficulty, with your dear friend. I am not in that country, so I do not know what to suggest, that might work in the UK health system.

I am thinking of you and of him, and hoping for something to improve , or someone to make a suggestion.

 

[MEPatient345]

I follow a UK Facebook MCAS group along with several others from PR. Croom, Grattan and Seneviratne seem to be the big players, Bethan Myers in Leicester gets a mention for paediatrics, Vic Khullar for urology cases. I'm aware of some severe patients getting Omalizumab (Xolair) but beyond the stuff I mentioned in my first paragraph I don't think we have much else available to us in the UK.

From another thread.. could he try one of these?

This thread:
https://forums.phoenixrising.me/ind...th-uk-specialist-who-can-diagnose-mcas.49751/

 

[Molly98]

Hi @Berzerkerina so sorry to hear how ill your dear friend is.

Dr William Weir is one of the most expert ME doctors in the UK.

He is based in Harley Street London. and see ME patients privately I will send you a PM with his details.

I am not sure if he can travel to patients or not but it would be worth speaking to him or his secretary and explaining how ill your friend is.

I am also tagging @Countrygirl into this post as she has experience of helping other very severe patients and may have more useful information and advice she can add

 

[Molly98]

@Berzerkerina I have just tried to PM you with Dr Weir's details but it won't let me, it may be because you a fairly new I don't know.

@Sushi @Learner1 @IThinkImTurningJapanese are any of you about and able to help here so that I can pm @Berzerkerina ? or if not can I forward the message via one of you. Thanks

 

[Sushi]

@Berzerkerina I have just tried to PM you with Dr Weir's details but it won't let me, it may be because you a fairly new I don't know.

@Sushi @Learner1 @IThinkImTurningJapanese are any of you about and able to help here so that I can pm @Berzerkerina ? or if not can I forward the message via one of you. Thanks

I started a conversation for you.

 

[Berzerkerina]

thanks!!!

 

[Molly98]

Thanks Sushi

 

[Starlight]

I'm not in the UK. I'm sorry I cannot help but I hope you will get details that will help him practically. It is awful to be so far away when someone you care about is ill and I know that you are also ill. You are a true friend to him and I hope that the situation for both of you will improve soon. It is so hard and so unfair and what you are trying to do deserves to work out well.

 

[ryan31337]

From another thread.. could he try one of these?

This thread:
https://forums.phoenixrising.me/ind...th-uk-specialist-who-can-diagnose-mcas.49751/

I would also add Professor Qasim Aziz to that list, a world-class neurogastroenterologist in London. He is particularly good for the POTS/MCAS/EDS triad. You can see him on NHS but you need a referral from a local gastroenterologist.

 

[Judee]

You could also post your request on this site: https://www.s4me.info/

It looks very similar to the Phoenix Rising site but I'm noticing that a lot of topics center around UK events and, when location is indicated, a lot of the members say they are in the UK.

 

[Moof]

Your friend can also change his NHS GP – and if he's getting so little help, it sounds as if he should. The MEA may be able to help him locate a more sympathetic GP in his area by asking people in their Facebook group if they have any recommendations. I really hope he manages to make some progress.

 

[5150]

Dear people,
As i posted lately i am moderate -severe and a friend of mine ( i love him but he is so severe that a relationship is not possible ) its going worse and worse in UK ( Southhamptom) .
He needs desperately a doctor who takes him seriously. He cant eat ,cant drink, he needs intraveouns saline , a mast cell stabilisator maybe ( ketitofen ) and he is willing to pay for every help he can get.
I live in Germany and i cant do anything from here, please folks in UK tell me there is a doctor there who can help a little...even if its expensive
My friend its literally dying and i contacted already the ME Association in UK , they can only say " call your GP"
wich is ridiculous because the GP doesnt prescribe him anything ....i hope you can help me.
I cant see him this way anymore

Very sorry to hear of yet another UK case of severe medical hardship , and hope for the best outcome for your friend. Bless you for trying to help. Wish I could do something worthwhile to help all of us, but Prayers is all I can offer.

 

[Jackdaw]

@Berzerkerina How is your friend? Seen Weir?

I recommend the ME Trust. Have a Dr for support and advice. V good and as he in the south may do home visits. V experienced with v severe.