Dr Klimas Recent Lecture ME Awareness Day (+ve XMRV paper coming)

[Kati]

What Parvo said square!

 

[JT1024]

Great thread! Thanks for all the info..

We need to clone Nancy Klimas....and Anne Whittemore....and Judy Mikovits...and Lenny Jason.....and......

Regarding ubiquinol, I had just been researching options. There is a good write up on ubiquinol here: http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=15329

iHerb has great options and I plan to purchase there in the future. I just bought 200mg CoQ10 so when I'm almost out, I plan on buying this: http://www.iherb.com/Allergy-Research-Group-Nutricology-CoQH-CF-60-Softgels/15307?at=0

 

[_Kim_]

I had mega problems with this video stalling and stopping and couldn't make it past the first 10 minutes. Thanks to our friend at the xmrvpositivedotcom channel on YouTube for uploading this lecture into three parts.

http://www.youtube.com/user/xmrvpositivedotcom#p/a/u/2/ql1VO9wXKDo

 

[dsdmom]

Can someone tell me what dosage of ubiquinol Dr. Klimas recommends?

Thanks!

Shelley

Shelley - she mentioned to me 60mg of ubiquinol (that is what was used in a Japanese study she really liked) or 200mg of Co-q10 2x day.

 

[SeaShel]

Thanks so much Parvo and dsdmom.

Just received an order from iherb this week, looks like I jumped the gun ;-)

On their website, there isn't a 60mg dosage. I wonder if she misspoke and meant 50?

Shelley

 

[Cloud]

I can feel the effects of Ubiquinol.....not so with ubiquinone. I take Jarrow Ubiquinol 100mg q day....but less may be better. Sundays are my supplement holiday (give liver a breather).

 

[_Kim_]

Other members have mentioned that Nancy Klimas recommends exercise for ME/CFS patients and so, I was particularly curious about what she had to say about this topic. The audio is poor, but this is what I think she said:

From part2 @ 2:50: Then there's just that plain deconditioning - "I've been so sick for so long, I lost my muscle mass, I'm not as strong as I was". And that's a player. You know, when you get over a relapse and you weren't as strong as when you started, you don't feel like you're over it. You still feel puny. So trying to consciously recondition is the focus of Irma's talk.

If you don't feel like you're over a relapse, you're probably not. "Reconditioning" sounds like dangerous advice to offer people who are on the upswing after a relapse.

Irma Rey (new doc at Klimas' clinic) talked more about this but the video has not been posted yet.

[video=youtube;kssea9EeyN8]http://www.youtube.com/watch?v=kssea9EeyN8[/video]

 

[Robin]

If you don't feel like you're over a relapse, you're probably not. "Reconditioning" sounds like dangerous advice to offer people who are on the upswing after a relapse.

I think you can be over a relapse and be deconditioned, especially if the relapse was severe and sudden.

However, I agree that re-conditioning is probably not great advice. For me, and many people, it's difficult to hold back when you feel better, and so easy to overdo. If you've been down for a a while there's probably a zillion things you want to get done that you've put off. You're going to recondition as you get up and move around more and it's not really something to worry about -- it just happens. Probably pacing would be the best advice.

 

[Kati]

I think you can be over a relapse and be deconditioned, especially if the relapse was severe and sudden.

However, I agree that re-conditioning is probably not great advice. For me, and many people, it's difficult to hold back when you feel better, and so easy to overdo. If you've been down for a a while there's probably a zillion things you want to get done that you've put off. You're going to recondition as you get up and move around more and it's not really something to worry about -- it just happens. Probably pacing would be the best advice.

I totally agree Robin. I can't wait for the moment my body will tell me I can go back on the bike, and can't wait till my wrists can support some weight and I can do push ups again. did I say push ups?

 

[Michelle]

Why do you assume that pacing and recoditioning are mutually exclusive? I'm mostly bedridden, but I do strength training exercises in bed starting with a few reps (2-4) and slowly work up. That's what I imagine Dr. Klimas is talking about.

 

[Dr. Yes]

Why do you assume that pacing and recoditioning are mutually exclusive? I'm mostly bedridden, but I do strength training exercises in bed starting with a few reps (2-4) and slowly work up. That's what I imagine Dr. Klimas is talking about.

Hi Michelle,

It's the increase.. no matter how slow.. that many cannot safely tolerate. That is why reconditioning is not a safe blanket prescription. Pacing in this case would mean staying within one's 'energy envelope', and if that envelope does not allow for any additional exercise/activity or any gradual increase in exercise/activity, then reconditioning of that sort is not possible. To push beyond that envelope would not be pacing, and would be contraindicated.

The two may not be mutually exclusive, but they often are, so the advice Klimas often gives on this subject without that recognition is very problematic.

 

[Kati]

I would hate to believe that getting reconditioned is the answer to feeling better- I would think that the best way to tackle the problem is at the source, likely from the immune system point of view. The Lights have proven that.

 

[Michelle]

I think maybe we're arguing about semantics. I would imagine Dr. Klimas knows well that reconditioning isn't going to cure anybody. And we all certainly know that reconditioning isn't a cure because we are all still sick. What I understood Dr Klimas to mean is that whether we can help it or not, deconditioning happens and does contribute on some level to our symptoms. Reconditioning WITHIN OUR LIMITS will help ameliorate SOME symptoms.

Case in point: I had a very bad crash a couple of weeks ago. I was too weak to do even the small strength training exercises I do normally in bed. After a week or so of resting, I started to feel better. However, my muscles had atrophied in just that week to the point where my sacro-iliac joint became unstable and I was having difficulting standing or walking. And I was in a great deal of pain. So, once I had returned to my normal level of 90% bedridden (down from 100% during the crash), I returned to doing my 4-5 reps of the abdominal exercise I do each day. Now my SI joint is more stable, and because my muscles are stronger, I feel less (though still plenty) weak and fatigued. That is the reconditioning I took Dr Klimas to mean. It does not mean that if I keep doing that, I will go on to continue improving until I'm no longer bedridden (if only!).

Reconditioning in and of itself is not a bad word and not something to be afraid of. Reconditioning without regard for limits or the reality of the disease (ala White, et. al) is.

 

[Dr. Yes]

Kati!! I didn't notice that you very quietly and without fanfare passed

1,000 posts !!​

So, here is some fanfare.. in the form of 1,000 sexy Canadian hockey players...

Okay I can't bring myself to do that. So here are a lot of macaws instead:







And here is just ONE sexy Canadian hockey player...



What? She came up when I googled "sexy Canadian hockey players". Look, she matches the macaws.

 

[Kati]

Awww Dr Yes that last picture was a lil too much- are you sure you didn't post it for yourself to go back too and adorn?

Thanks for the nice parrot shots, the clay lick is exactly what I've seen in Peru, it was fabulous, and quite the raucus...

 

[justinreilly]

Hi Michelle,

It's the increase.. no matter how slow.. that many cannot safely tolerate. That is why reconditioning is not a safe blanket prescription. Pacing in this case would mean staying within one's 'energy envelope', and if that envelope does not allow for any additional exercise/activity or any gradual increase in exercise/activity, then reconditioning of that sort is not possible. To push beyond that envelope would not be pacing, and would be contraindicated.

The two may not be mutually exclusive, but they often are, so the advice Klimas often gives on this subject without that recognition is very problematic.

Excellent articulation of the problem and correct approach!!!

Staying within the energy envelope is of paramount importance. Anything that pushes one outside the envelope, as exercise/activity, particularly GET, often will, is contraindicated!

 

[justinreilly]

Thank God a confirmatory study is coming out!! (knock on wood) This has got to be the second biggest positive event in ME history after the WPI paper. They will not be able to ignore us any longer! :victory:

I can see them trying the 'well that was only one confirmatory study, we need another before we're sure.' Don't let them pull this or any other BS. No more asking politely for help. I will be demanding our civil rights.

We will not go to the back of the bus anymore!

 

[Otis]

Awww Dr Yes that last picture was a lil too much- are you sure you didn't post it for yourself to go back too and adorn?

That was a photo OF Dr. Yes.

You said you were saving that shot just for me - Dr. Maybe. :worried:



I return you to our vigil for that positive paper!