Video - Brief Status on My CFS Recovery and Support

[Skyline]

Hey all,

Some of you may know me from my thread where I keep a record of my progress to recovery, tests and treatment. It is a positive story at this point, which I briefly describe in this video.

Although it's not the initial purpose, I hope the video in some way offers you a source of motivation.

The video is a 90 second audition to take part in a workshop (only 6 people will be selected) with Dave Asprey, who has his own recovery story related to chronic disease and mycotoxins. His blogs and videos opened my eyes and got me going in some directions that have helped me considerably. I would like to learn more from him to further my recovery.

It would help my audition if the video on youtube gets more activity. So I would appreciate it tremendously if you could take the time to watch it, like it and add a comment on youtube.

P.s. You can go directly to the video on YouTube by clicking on the youtube logo in bottom right hand corner of the video above.


Some more background on my story

As with most, I believe CFS can be caused by many different events and processes within the body. There are many roads to CFS, so there will never be a treatment that works for everyone.

However, I think there are also common parts that are definitely helpful for nearly all. In my case mycotoxins, mold and detox have been playing a big part and were probably the initial 'event' that took me down. I think 'energy resources' management (pacing) and rebuilding the methylation process, glutathione and the mitochondria should help virtually everyone.

The details of my approach can be seen:
A) In this 'updates' pheonix rising thread where I try to be as transparent and quantified as possible about what I'm doing in the hope that it's helpful to others.
B) This post on my blog with an overview of my treatment strategy.

 

[Mij]

On your blog you wrote:

"Due to the lack of research into Chronic Fatigue Syndrome and Myalgic Encephalitis (ME) (which is the same condition)"

This in incorrect. Secondly, it's myalgic encephalomyelitis. I'm suspicious of people who don't use the correct diagnosis and spelling.

 

[Skyline]

Thanks for the correction on the typo Mij.

As for the research, I understand your different viewpoint, but I think the patient population as a whole considers that research is underfunded to get the job done given the number of people affected, economic impact as well as its complexity.

 

[Plum]

Please understand the difference between ME and CFS as despite them being used interchangeably in some countries, they aren't the same.

I am very interested to learn about your experience with toxins and am currently looking at your blog. I feel toxins are a huge issue for me.

I will leave you a comment on youtube and good luck with everything

 

[Skyline]

Hi Plum thanks for your encouragement and support, and I hope my experience is motivating.

There are many others that have around A LOT longer than me that have had success with the toxin road - Lisa Petrison and Erik Johnson are particularly active and have some good facebook update pages (like this one).

There are certainly a lot of 'politics' around CFS/ ME that don't help, I try to stay out of it I'm originally from the UK, and in discussions with doctors and patients there CFS / ME got clumped together.

I think most agree now that CFS isn't one disease, and is more likely many (i.e. as was proposed by Stephen Holgate in the UK recently). So we've each got to find the treatment path that works for us.

 

[Plum]

Skyline I live in the UK now so I do know what you mean although CFS is not a good term for what we have.

I have been working on detoxing due to a sluggish liver but hadn't come across some of the things you mentioned on yr blog.

Not to sound negative but I did get better than I currently am and was able to walk about 4 hours a day. I'm currently back to 10% functioning. Don't push yourself and still take it easy even though yr able to do a lot more. But I do hope that you stay well

 

[Skyline]

Yeah, eventually CFS will get classified under 10 new categories with more meaning no doubt...

Skyline
Not to sound negative but I did get better than I currently am and was able to walk about 4 hours a day. I'm currently back to 10% functioning. Don't push yourself and still take it easy even though yr able to do a lot more. But I do hope that you stay well

Heeded - I've read about enough regressions to know that this is something I'm probably going to have to take seriously for many years to come, if not forever and even if I get to feeling and acting 100% normal.

 

[Plum]

Skyline - were you ever tested for adrenal fatigue? Perhaps you've written about it somewhere put I didn't see it.

 

[Skyline]

I'm sure it's a factor, but more likely consequence of all the other documented damage going on inside me.

I've been working on getting it tested properly via biohealth lab, but from UK turned out to be a bit tricky admin wise.

FYI as I dug into it I learned that a lot of the tests aren't very accurate (can give you false negatives in particular). That lab is recommended by Chris Kresser who is usually very conservative, and he mentioned that other labs were giving him inaccurate results. So I'm getting mine from there. Expect it to be not so good, so will use it more as a 'progress' biomarker.

 

[Skyline]

Booom! Update... just heard. I'm in!

Thanks for everyone who helped support my video audition to Dave Asprey's Bulletproof Life event! FYI this is the event I will be taking part in (http://www.creativelive.com/courses/bulletproof-life-dave-asprey). Awesome - looking forward to learning some upgrades to get this recovery on acceleration!

Look out for a write up afterwards beginning of September and hopefully some great pointers to stuff that anyone with CFS can use to get more life back.