Comments on: HPA Axis and Sleep Schedules

By: Dan

Dan — Tue, 24 Jun 2008 21:57:35 +0000

I guess I should’ve stressed the point of my last comment: One of the MAIN keys to Martha’s complete recovery is that she slept 10 hours a night, then took a two hour nap EVERY DAY for a year, until she was better.

If she felt better and felt more ‘energy’ on a particular day, her husband was there to make sure she still got that 10 hours of sleep a night, and took naps every day.

By: Dan

Dan — Mon, 09 Jun 2008 17:56:23 +0000

Surprisingly to some, many people have completely recovered from CFS/ME. Yes, it is rare, but it does happen. I know 3 people in my local CFS group who are now completely healthy. One was sick for 17 years and could not leave her home.

And here’s a link to an interview with Martha Kilcoyne, a woman who was bedridden with CFS, and celebrated her recovery several years later by climbing MT. KILIMANJARO. She’s been healthy for the last 10 years.

Here’s the link:

http://phoenix-cfs.org/IntKilcoyne.htm

Here’s to “better” days for all of us,

Dan

By: morgan viera

morgan viera — Sun, 18 May 2008 03:49:38 +0000

This physician, Dr. Lerner, specializes in CFS caused by EB-he had/has it himself but was/has been able to treat himself using antivirals. He’s in the US, but maybe he can refer you to someone in the UK. His studies are also on the website, with protocols, so maybe you can find a dr. in the UK who would follow them:
http://www.cfsviraltreatment.com/

The Valcyte protocol (for people with high EB and HHV-6 titers and CFS) has also been helpful according to a researcher at Stanford, Dr. Montoya-more info is available here:
http://www.hhv-6foundation.org/index.html

If you cannot get help in the UK, maybe you should consider going elsewhere if you are able-the UK has a very bad reputation for its treatment of people with CFS. Good luck-I hope that you get the help you need!!

By: matthew sanca

matthew sanca — Tue, 13 May 2008 20:34:06 +0000

It was interesting to read about the doctor who overcame his
csf, induced by Epstein Barr virus, by using anti-viral drugs.
I live in the UK, and also suffer with cfs. My blood test revealed a high level of Epstein Barr virus, but the doctors simply ignore it, saying it does not cause the fatigue, and wouldn`t dream about using the anti viral drugs, to at least try
to improve my state of health. Some situation this is! Has anybody got a helpful suggestion regarding this?

Regards,
Matthew Sanca,
London, UK

By: Jenna

Jenna — Wed, 23 Apr 2008 17:50:57 +0000

One thing to try might be shifting your go to sleep time to 10pm. I’ve heard that any time after that, and you mess with the melatonin and other biorhythms.

I’ve been doing well with 8:30pm-6:30am, but I might be a little extreme ;).