Dr. DeMeirleir speaking Jan 28/13

[justy]

The main thing i can't get my head around is the discussion on autoimmunity. On the one hand he states: (in relation to Gc MAF)

Risks include a shift to autoimmunity and an immune reconstitution reaction known as IRIS although none of his patients have developed autoimmune disease as a result of Gc-MAF

But on the other hand

Dr. De Meirleir concluded his talk with a detailed slide describing the various pathways that are disrupted in ME and several other autoimmune diseases. He spoke about a continuum of autoimmune diseases including ME, lupus, RA, type 1 diabetes, and remitting MS

So he seems to be saying that his patients on GcMAF are not showing signs of developing an autoimmune problem, but at the same time that M.E is on a continuum withother autoimmune diseases.

Am i wrong in thinking this doesnt make sense? It is one of the things that has put me off GcMAF - if i have an autoimmune disease theni wouldnt want to take something that could exacerbate this.

All the best, Justy.

 

[Daffodil]

i heard recently that gcmaf is showing promise in MS, too.

maybe there is no such thing as pure autoimmunity..maybe it is some latent viral proteins or some HERV(s) driving the entire thing, in which case, it sort of makes sense that GcMAF can help....

 

[beaverfury]

KDM's model for it, as I've learned from other presentations and some bits that he has given to me at the consultations, is that there are several predisposing factors that leads to the vulnerability for certain infections. Some are genetic, at my last consultation he talked about a genetically based weakness in the Th1 immunity, which then would lead to greater risk for persistency in infections like EBV, bartonella and borrelia, and a greater risk for the Th1->Th2 shift that usually is a part of ME. But he has also talked a lot about gut dysbiosis as a cause of disruption of the immune system - dysbiosis is almost universally present in ME patients, and he thinks the dysbiosis comes first, causing what he calls a "pre-ME"-state. I think they do some research at his university about the gut flora and it's connection to conditions like ADHD and autism. Due to the immune dysfunctions the body can't get rid of certain infections well enough, and dormant viruses like herpes viruses get reactivated much more often than normal. The infections disrupt the immune system even more (pathogens often have specific mechanisms for doing just that), and at some point the load is so big that there's an ME outbreak. It makes total sense that an infection with something like EBV, bartonella or borrelia could be the tipping point since those are pathogens that are especially cumbersome for the immune system.

I guess we'll have to wait another month for the new info on auto-immunity until the article is published, but I'm also anxious to see this presentation since I think it's been a few years since KDM has summarized his model and his treatment approach in a lecture (AFAIK). My guess is that his treatment approach isn't going to change very much because of this auto-immune mechanism, it's probably still the complex of immune dysfunction (including gut dysbiosis) and persistent infections that needs to be treated to reduce the auto-immune activity. Medicine hasn't come very far on the road to finding ways to stop auto-immunity, maybe approaches like KDM's that focus on the immune dysfunctions that might be what triggers the auto-immunity is a way forward?

Thank you, Leachim

That gives me some direction to go in my own treatment.

I am seeing a doctor in Western Aus, Perth, who follows KDM's treatment protocols (as far as i can see).

He wants me to get the most of the tests that Snowathlete got in his recent journey to Dr Meirleir in Belgium.
I was baulking at this because it amounts to $1400 worth of tests from Germany and Sydney, but it looks like the only way forward for me.

The tests are - Borrelia, Erlichia, mycoplasmas, Chlamydia pn, Brucella, Ricketssia, Toxoplasma, CD3, CD57, CD4,
CD8, CD56, UEC/LFT, Coeliac disease screen and lots lots more. Should cover it.

He's also given me a fructose, fructans, dairy free diet which i havent followed very religiously yet.

 

[beaverfury]

Leachim, your explanation makes sense to me. The only thing in it that I still haven't sorted out for myself is the whole gut thing. I am one of the few fortunate PWME with no GI problems. My digestive system is probably the only system that doesn't give me trouble. So if I have a gut dysbiosis, it would have to be something that doesn't give noticeable symptoms -- which is possible.
.

SOC,

I said exactly the same thing. I wasnt aware of any gut problems at all!

After i contracted CFS, among other things, i had two years of misery from overheating and a burning feeling all over my skin and torso. My naturopath told me i had dysbiosis and insisted i take glutamine. Within a week the burning and overheating had subsided considerably, and its rarely a problem now.

I find the harder i work on my gut, with all the tools of diet, supplements, detox, probiotics, the better my general health and energy are. Even though i dont have obvious problems of pain, bloating, diarrhea.

Wayne posted a good link to http://mindd.org/s/archives.php/107-Disorders.html#spd today.

 

[SOC]

SOC,

I said exactly the same thing. I wasnt aware of any gut problems at all!

After i contracted CFS, among other things, i had two years of misery from overheating and a burning feeling all over my skin and torso. My naturopath told me i had dysbiosis and insisted i take glutamine. Within a week the burning and overheating had subsided considerably, and its rarely a problem now.

I find the harder i work on my gut, with all the tools of diet, supplements, detox, probiotics, the better my general health and energy are. Even though i dont have obvious problems of pain, bloating, diarrhea.

Wayne posted a good link to http://mindd.org/s/archives.php/107-Disorders.html#spd today.

Oh Lord, no! Not another complex and poorly understood illness feature that will require educating myself on details of medical science (?) that I never wanted to know!

 

[Sushi]

Oh Lord, no! Not another complex and poorly understood illness feature that will require educating myself on details of medical science (?) that I never wanted to know!

Didn't want to know or believe either. No gut symptoms but a DNA based gut test revealed a big mess there.

Sushi

 

[Daffodil]

i think KDM tests for 20 species of bartonella but not sure

 

[Sushi]

Whittemore Peterson Institute Hi, Dr. Demeirleir asked us to edit the recording as their are slides and parts of the talk that were recorded that are part of unpublished data for new manuscripts. We hope to have it up after March 1st when one of the papers is published. Thank you for writing. I hope this helps.

 

[snowathlete]

I played the video twice and it was double dutch to me.

Only two likes?! Come on everyone, It was funny!

 

[snowathlete]

When I first got ME I got IBS. Was prescribed a muscle relaxant. Worked. Took maybe ten doses when I got it. Then it stopped. My gut seems fine. Will be interesting to see what my stool test finds, if anything.

 

[clive powney]

Only two likes?! Come on everyone, It was funny!

Thanks mate, I wonder sometimes is it just me and a few others?????

 

[Rolo]

The videos are on this site and will be translated in english, but it will take some time.
There will be some new videos too.

I've just noticed that the 3 first episodes are re-uploaded with English sub titles!! I suppose the rest will follow


http://www.youtube.com/user/WetenschapvMEcvsVer/videos

Enjoy
Rolo

 

[Guido den Broeder]

I prefer the ME/CFS Alert videos. IMHO, De Meirleir hasn't made much progress since he started saying it's all in the gut.

There are many ME patients without significant gut problems, and his theories don't explain the incubation period observed in outbreaks of ME.