Planning to see Dr William Weir, Harley St. Any advice or opinions?

[RuthT]

I saw him in the early 1990s - my GP pretty much referred me straight to Coppetts Wood, part of the Royal Free. He was helpful, caring & down to earth about what was & was not known & the research he was doing then. I wasn’t eligible.

He did give me the best advice I could have had then - try and get the balance between doing too much & doing too little. Try and avoid stress & meditation might be helpful for some. No easy answers, no psych nonsense.

I gradually recovered to 80-90% before a second hit recently. If I could easily afford to see him & pay for recommended treatment, or if his letter would support any financial claims, I probably would give it a go, but also wary of downsides, of hope & expectations.

 

[Jenny]

I emailed him a few months ago asking him about his experience in using anti-retrovirals and whether he might prescribe them for me. I gave him my history.

He was good enough to arrange a (free) phone consultation, where he explained that he has had very mixed results, and we decided that I would not try them for the moment.

He doesn't seem to have anything else to offer that I haven't already tried, but if I had a list of medications I would like to try I would probably go to see him.

 

[wastwater]

Has he retired and I wonder is there any wisdom in picking up a diagnosis

 

[Tella]

I emailed him a few months ago asking him about his experience in using anti-retrovirals and whether he might prescribe them for me. I gave him my history.

He was good enough to arrange a (free) phone consultation, where he explained that he has had very mixed results, and we decided that I would not try them for the moment.

He doesn't seem to have anything else to offer that I haven't already tried, but if I had a list of medications I would like to try I would probably go to see him.

Where do u find his email address please? Can’t find anywhere!!

 

[Countrygirl]

@Tella If it is of any help to you, Dr Weir runs clinics from my house for half his usual fee. Normally, he comes about every six weeks, although it might not be so over the winter. He sees eight-ten patients over the weekend. The clinic (i.e. my house ) is between Exeter and Honiton. A number of people make a holiday out of it and stay in a local B&B and visit the coast and the moors as there is lovely country and places to visit here.

He is next here 14th and 15th November but the clinic is full just now.

 

[Tella]

@Tella If it is of any help to you, Dr Weir runs clinics from my house for half his usual fee. Normally, he comes about every six weeks, although it might not be so over the winter. He sees eight-ten patients over the weekend. The clinic (i.e. my house ) is between Exeter and Honiton. A number of people make a holiday out of it and stay in a local B&B and visit the coast and the moors as there is lovely country and places to visit here.

He is next here 14th and 15th November but the clinic is full just now.

Thanks a lot. Sadly I’m too severe to travel, would have loved to have a holiday. Do u know how to contact him to have a Skype/phone apt? How did u get in touch to offer your house as a practice and why did he start doing that?

 

[Countrygirl]

Thanks a lot. Sadly I’m too severe to travel, would have loved to have a holiday. Do u know how to contact him to have a Skype/phone apt? How did u get in touch to offer your house as a practice and why did he start doing that?

Hello @Tella,

It all started because I had the cheek to contact him after my attempt to see him in London resulted in a three-month relapse. (I had previously met him in 1987 when he came to my home in Bristol when we invited him to speak to our new Bristol group which three of us had just started. We were both young things then.)

I realised I was too sick to get to him, so I suggested that he used my home for others like me who would like to see him but couldn't get to London. Fortunately. he agreed and we have been going strong ever since. I have found he is one of the few who can restore our faith in human nature.

Another patient has asked if she can skype him as she is too ill to attend her second appointment at my home although she is in the same county.

What I will say though, is since getting to know him, I am just astonished how much he does for us.................he never stops and seems to be driving himself into the ground for the ME patients. He is the kindest and most supportive doctor I have ever met and we owe him a great debt of gratitude. He is no spring chicken either. Few know how dedicated he is to the patient community and how much he does behind the scenes which most of us never hear about. As a result though, he hardly ever answers emails as he just does not have the time.
I do have his email, but I cannot pass it on without his permission and anyway, he rarely answers as he just does not have the time.

You could try his 10 Harley Street address perhaps if you cannot travel to see him in my home.

He has visited patients at my request but it has cost up to £750 which is a bit ouchy.

 

[Tella]

Hello @Tella,

It all started because I had the cheek to contact him after my attempt to see him in London resulted in a three-month relapse. (I had previously met him in 1987 when he came to my home in Bristol when we invited him to speak to our new Bristol group which three of us had just started. We were both young things then.)

I realised I was too sick to get to him, so I suggested that he used my home for others like me who would like to see him but couldn't get to London. Fortunately. he agreed and we have been going strong ever since. I have found he is one of the few who can restore our faith in human nature.

Another patient has asked if she can skype him as she is too ill to attend her second appointment at my home although she is in the same county.

What I will say though, is since getting to know him, I am just astonished how much he does for us.................he never stops and seems to be driving himself into the ground for the ME patients. He is the kindest and most supportive doctor I have ever met and we owe him a great debt of gratitude. He is no spring chicken either. Few know how dedicated he is to the patient community and how much he does behind the scenes which most of us never hear about. As a result though, he hardly ever answers emails as he just does not have the time.
I do have his email, but I cannot pass it on without his permission and anyway, he rarely answers as he just does not have the time.

You could try his 10 Harley Street address perhaps if you cannot travel to see him in my home.

He has visited patients at my request but it has cost up to £750 which is a bit ouchy.

Thanks! He does sound like one of the best ME docs in the UK indeed. I’ll try to contact Harley and see if I can phone him as I’m too ill to travel anywhere. Thanks for sharing the wonderful story and making your home a space to help others! How lovely

 

[Tella]

I should update really; the 3 months of anti-retroviral didn't work for me, I could have been taking sugar pills for all the effect they had on me. At the end of the 3 months he suggested a combination of anti-retrovirals but the emotional investment I made (as well as the financial) was too great for me to try another expensive shot in the dark.
I had no ill physical effects, but did become significantly more depressed during the 3month trial and tried Fluoxetine (Prozac) which really did mess me up. I was incredibly happy on the fluoxetine, but didn't sleep more than an hour or two a night which led to a major crash and some spectacular falls.
Dr Weir is a good guy, he will write supportive letters and prescribe privately. He's very prompt with answering emails and the like. I wouldn't let my experience with ARVs put anyone else off - if you've had a sudden ME onset after a virus and had been very well beforehand then it's probably worth a try.
My own personal theory is that my ME isn't perpetuated by a virus, it was inherited from my mother and I've passed it on to my daughter. The only time I've felt truly well and full of energy was the 9 months I breast fed.
Before I invest hope in another treatment I need more evidence, but that's just me.

Studies show that to see improvement one has to try antivirals for at least 6 months. And rule out bacterial infections

 

[Inez]

Hi @Countrygirl. I live in south west England. Are you and Dr Weir still planning to have a clinic when Covid 19 is over? (whenever that may be!). Could I message you to find out more about how he works?
Many thanks!!

 

[ruben]

Hi there Inezella, I wanted to send you a private message but can't seem to see where to start one. Or am I just losing the plot?