Immune Therapy

[Uno]

Hi Guys

I am new on this board...I have suffered from M.E for 2 years and am housebound. I have been fighting to get Immune therapy and antiviral treatment for months. I live in the UK I don't know if you are aware but in the UK there is absolutely NO treatment for M.E other than psychiatric counselling. The illness is viewed and treated as a mental disease and I am being treated as such despite certain doctors finding stuff wrong with my immune system, they won't do anything except send me for a mental health assessment.

I saw this thread and read all about the treatments you guys are getting and burst into tears - there are drug options out there. I knew there was but the chances of me being offered anything are nil. I was considering coming over to the U.S for treatment, now I am almost certain it is my only option.

 

[aquariusgirl]

seeking txt in the US

Hi Uno

I certainly understand your frustration. The UK is a wilderness for ME sufferers.

But lots of us on here have seen a lot of US docs ..and got nowhere..and if we'd had to pay out of pocket for all the costs ..we'd be broke. (Most of us have insurance that covers all or the majority of the costs.)

Not to bash all US docs.. just saying ME or PWCs often cycle thru a lot of docs.

I have heard of dr Enlander in NY working with patients in Ireland.. You may want to look into that.

And of course there is Dr Myhill in Wales.

The tough part is finding effective txts..that work for you. That's probably easier this side of the Atlantic ... but it's still not a slam dunk. Far from it.

Just food for thought.

Best of luck.

 

[Jenny]

Treatment in UK

Hi Uno

There are private doctors who will treat ME in the UK, for example those at the Breakspear Clinic. I don't know of any clear successes though.

Jenny

 

[garcia]

Hi Uno

There are private doctors who will treat ME in the UK, for example those at the Breakspear Clinic. I don't know of any clear successes though.

Jenny

Jenny, I have to disagree. No one in the UK treats ME. At best they treat idiopathic chronic fatigue (not even CFS).

 

[Jenny]

Treating ME

Hi garcia - good to see you on this forum.

As to whether there are private docs in the UK who treat ME, the Breakspear Clinic do. I've been going there for 18 months. I've had a huge number of tests, including the Acumen mitochondria and DNA adduct tests, tests for Lyme and co-infections, tests for dysbiosis, autonomic functioning tests, and tests for levels of O2 and CO2.

My treatment has involved IV and oral antibiotics for 18 months and nutritional supplements.

I'm no better, but am continuing with the abx ....

Jenny

 

[garcia]

Hi Jenny,
the Breakspear is probably the closest thing we have to proper ME/CFS treatment, but it still falls a long way short IMHO. IV antibiotics is probably as state-of-the-art as their treatment gets. Useful in some cases, but not others.

My bare minimum list of tests I would want from a place include:
-NK cell function test
-Urinary 24-hour GH
-Sleep study
-XMRV test
-Viral infection array (to test for all relevant viruses)

I don't know if Breakspear do any of those?

 

[fresh_eyes]

I'll echo aquariusgirl on this one - the vast majority of us here in the US are *not* getting that antiviral testing and care. I don't have any insurance (and don't qualify now now because of the "pre-existing condition" of ME/CFS), and couldn't possibly pay the costs out-of-pocket - was just looking at Dr Cheney's web site, and the initial consultation costs something like $8,000 , with little assurance of a cure or even improvement.

I think the XMRV discovery may change the situation for all of us. I'm just waiting for that.

 

[Jenny]

Breakspear

Hi Garcia

Out of your list I think the Breakspear may do some testing for viruses, but I haven't been offered that so far, since my tests showed various bacterial infections. Apparently they are looking into offering a test for XMRV at some point in the future.

Of course what they offer is inadequate - what isn't? Many in the US can't get adequate testing and treatment either. But the doctor I'm seeing has many years of attempting to treat ME patients, and he clearly believes that various pathogens are involved. After 27 years of looking for someone who has any understanding of this condition, I think this clinic seems to offer at least a genuine attempt to help and to look at a range of dysfunctional systems. But it is expensive and as I said before, I haven't personally heard of anyone with ME who has had permanent improvements, though some Lyme patients say they have.

Jenny

 

[leelaplay]

Jenny, I have to disagree. No one in the UK treats ME. At best they treat idiopathic chronic fatigue (not even CFS).

You do not have it easy in the UK. It's hard to believe crap like this is real in the modern world - sounds like the dark ages! Very frightening.

re: doctors

What about Dr Sarah Myhill? http://www.drmyhill.co.uk/

Although she seems to have become a big internet business, and I do find it odd that her site now lists only fatigue under health topics rather than CFS or ME.

Have liked some of what she's published, especially CFS is Heart Failure Secondary to Mitochondrial Failure, as of all the theories I'd seen at the time it came out, it seemed to explain the energy cycle the best.

However, just looked for it on her site and the article is gone! Sure hope I saved a hard copy somewhere.

islandfinn

 

[cfs since 1998]

Have liked some of what she's published, especially CFS is Heart Failure Secondary to Mitochondrial Failure, as of all the theories I'd seen at the time it came out, it seemed to explain the energy cycle the best.

Interestingly, apparently the retrovirus that Elaine DeFreitas was looking at in 1991, which she and her colleagues named CFIDS Associated Virus (CAV) was found in the mitochondria.

http://www.ncf-net.org/forum/revelations.html

 

[Chris]

Myhill on mitochondria/ heart

Hi, Islandfinn and others--just checked Sarah Myhill's site, and I think the article you mentioned has been reshaped and is now at the end of "CFS: the Central Cause: Mitochondrial Failure", under the general topic of "Fatigue." Much of that essay depends heavily on Cheney's earlier "The Heart of the Matter, " which is still available on the net--at least was when I last looked! But I agree with Islandfinn--the basic thesis explains a great deal of what is going on in me, and I gather a good many others. And most of the supplements mentioned are available--I hope in England too, though not sure of that.

Martin Pall's work is also available on the web at http://sprident.com/martin-pall/cfs.htm , and contains a list of the supplements used by some of the best known CFS doctors, including Cheney (he has of course since then changed his treatment considerably). Rich van Konynenburg's protocol is available on this site, and has helped some, including myself. If you are in England, I guess you can't get much in the way of tests, nor have antivirals prescribed, but the situation is not much different in Canada, unless you are lucky enough to live near one of the very, very few doctors who know anything about CFS. In any case, reading through the experiences people have had with antivirals in the US on this forum has left me a little sceptical about them--they help some, but not very many for very long, I think.

I don't want to minimize the damage done by the English attitude--it is appalling--but I am not sure that using available supplements and so on may not be just as useful until and unless the XMRV thing is really established, at which point I assume that even the English medical establishment will take notice--maybe...

The situation in England is lousy, but it ain't good anywhere! Best of luck, Chris.