An ME/CFS specialist who can travel in UK or distance-prescribe?

[John1981]

My sister is being admitted to a regional UK hospital after developing ME eight months ago. She can no longer move or eat with a straw, and will have to be tube fed. I would like her to be seen urgently by someone who can at least attempt a treatment (e.g. Ampligen, Rituximab, Vistide, etc).

So my question is: if you had a sister in the UK in this state, and assuming unlimited funds (not quite the case, but we can try!), which doctor would you approach? (either UK-based, or based abroad and able to distance-diagnose/prescribe)

Thanks in advance!

 

[helen1]

I've read good things about these two doctors:

Dr Kenny de Meirleir in Brussels.

Dr Sarah Myhill in Wales.

Members of this forum are or have been patients of theirs and have written on this forum about their experiences seeing these doctors. You can probably find their posts by using the search window.

 

[Sushi]

I've read good things about these two doctors:

Dr Kenny de Meirleir in Brussels.

Dr Sarah Myhill in Wales.

Members of this forum are or have been patients of theirs and have written on this forum about their experiences seeing these doctors. You can probably find their posts by using the search window.

John1981

This is so very sad. Re: Dr. De Meirleir, he has to see patients in person before he can test and prescribe. I don't believe he can practice in the UK directly.

Best wishes,
Sushi

 

[ukxmrv]

Dr William Weir will often travel to visit patients in the UK. He has a good reputation with the NHS still. This can really help when faced with problems in the NHS.

My last contact for him was his Harley St office but I understand he spends time in Ireland as well.

I doubt that he will be able to help with experimental treatments. You are after the Holy Grail in the UK but patients are getting help if they have money. It may be at least worth a visit from Dr Weir and a discussion on any treatments he can prescribe or even if he will monitor and advise/help you work with a Dr abroad to get any tests before or after an experimental treatment. It's unlikely that a NHS doctor will help in this way and they may act in the hospital to actively block any plans that you make. It's happened before.

Something to consider would be a Sykpe consult with Dr Enlander or Dr Klimas. I've known other UK patients who have done this. Dr Enlander does come to the UK and he sees patients here. You'll have to discuss with his office when that will be and if he was travel to your area though.

You didn't say if your sister was an adult or a child?

 

[John1981]

Dr William Weir will often travel to visit patients in the UK. He has a good reputation with the NHS still. This can really help when faced with problems in the NHS.

My last contact for him was his Harley St office but I understand he spends time in Ireland as well.

I doubt that he will be able to help with experimental treatments. You are after the Holy Grail in the UK but patients are getting help if they have money. It may be at least work a visit from Dr Weir and a discussion on any treatments he can prescribe or even if he will monitor and advise/help you work with a Dr abroad to get any tests before or after an experimental treatment. It's unlikely that a NHS doctor will help in this way and they may act in the hospital to actively block any plans that you make. It's happened before.

Something to consider would be a Sykpe consult with Dr Enlander or Dr Klimas. I've known other UK patients who have done this. Dr Enlander does come to the UK and he sees patients here. You'll have to discuss with his office when that will be and if he was travel to your area though.

You didn't say if your sister was an adult or a child?

Thanks, this is useful. I've been in touch with both Dr Weir and Dr Enlander, but hadn't considered the fact that the former could act as a kind of intermediary between the NHS and the latter. I will see Enlander myself in New York, and discuss what can be done. My sister is 37 years old.

 

[maryb]

Sorry I can't be of help. I was admitted to hospital a few times too. When I felt well enough I was bundled into the back of the car on pillows and driven down to Breakspear, they are okay for viral testing etc and IV vitamins/minerals. but if your sister improves enough I would drive her over to Prof de Merleir.
I feel so sad for her desperate situation - I hope she sees some improvement. She's very lucky having such a caring brother. good luck with finding some help for her.

 

[MeSci]

Thanks, this is useful. I've been in touch with both Dr Weir and Dr Enlander, but hadn't considered the fact that the former could act as a kind of intermediary between the NHS and the latter. I will see Enlander myself in New York, and discuss what can be done. My sister is 37 years old.

I very much hope your sister gets some help very soon, John. I would be concerned about her being in the hands of the NHS. Their record on treating ME is pretty horrendous, as the NICE guidelines only recommend the dangerous and useless CBT/GET.

I have no personal experience of a good ME doctor but think that the recommendations so far are good ones. I wish you all the luck you need.

 

[Seven7]

John1981 She is so lucky to have a brother like you. Not all of us are as lucky as to have that kind of support and unconditional love from a close one. Kudos to you my friend and best of luck in this journey. Very admiring!

 

[Skyline]

Another strong vote for Dr. Sarah Myhill from me - in particular with your sister's extreme energy symptom case she has two advantages:
1. She is happy to work at distance (you just order tests/ consultations via email or phone with her). So working at distance is no problem. I arranged my latest test with her from Mexico.
2. Her research into mitochondria and the mitochondria functional profile could be very enlightening for your sister's case - that's where I would look first for answers where 'energy issues' are most important.

Hope this helps - good luck and I would strongly encourage you to take control of the situation and not just leave it to the hospital.

Feel free to PM me if you want to know anything more about my personal experience with Myhill or 'working from a distance' - all of my consultations with doctors etc. has been done remotely (e.g. Thailand, Mexico) - it's a little more complicated but completely doable - don't let it get in the way of getting the best.

 

[*GG*]

John1981 She is so lucky to have a brother like you. Not all of us are as lucky as to have that kind of support and unconditional love from a close one. Kudos to you my friend and best of luck in this journey. Very admiring!

And touching!

GG

 

[aquariusgirl]

Don't think Kenny de meirleir has all the answers but he is head & shoulders above the names you mentioned. Probably can't do much for her until she is stabilized & out of an NHS hospital.