Llewellyn King interviews Dr. De Meirleir (Part 2): ME/CFS Alert, Episode 43

[Ember]

“I think within five years we will be able to help 70% of the patients.”

 

[Sushi]

Thanks Ember

Very interesting and encouraging.

Sushi

 

[Sasha]

Sounds like he's got some interesting stuff there that he can't really talk about yet.

 

[Undisclosed]

Great interview, especially this:

Dr DeMeirler: I think within five years we'll be able to help seventy percent of the patients. Those who have been sick for thirty to forty years and have a lot of abnormalities at the molecular level they're going to be very difficult to treat.

Llewellyn King: Doctor what is going to happen within five years? What is the seminal thing that is going to bring this about?

Dr DeMeirler: We’re going to understand this other form of chronic inflammation and immune depression. We’re going to understand what that is and if we understand why that is we can treat it. We can do clinical trials, placebo controlled and convince everybody.

 

[Artstu]

I'd not seen a link to The Telegraph article http://www.telegraph.co.uk/health/5407749/ME-Proof-that-it-isnt-all-in-the-mind.html

 

[Sasha]

Great interview, especially this:

Those who have been sick for thirty to forty years and have a lot of abnormalities at the molecular level they're going to be very difficult to treat.


That bit was a bit of a bummer, though - 27 years ill, here.

I wonder what sort of abnormalities at the molecular level we could have that shorter-term people don't though?

In general, very upbeat.

 

[snowathlete]

It really sounds like he has found something big. Cant wait for the paper to be published inn 2013/14.

 

[LisaGoddard]

I agree it is really tantalising.
One of the worst symptoms of ME is 'waiting'.

 

[ukxmrv]

I wonder as well, Sasha.

Don't really understand why the 30, 50 years should be impossible to treat. I'm around 30 now.

 

[Daffodil]

he could be referring to the misfolded proteis (prion related??) that could be difficult to bring under control.....just guessing. he does a prion test of some sort

 

[alex3619]

I don't regard misfolded proteins as prions. He does find misfolded proteins, and there was concern that they might be prions at one point (all prions are misfolded proteins, but not all misfolded proteins are prions). Prions are misfolded proteins that cause further misfolding of proteins, typically unfolded proteins of the same type. There are so many reasons why we might have misfolded proteins, and top of the list is glutathione inadequacy.

If I were going to speculate on what might cause more issues in long term patients, it would be more mitochondrial damage and more vascular remodelling. More brain degeneration may also be an issue.

 

[PNR2008]

I'm at 25yrs now. Any improvement in my symptoms would be a welcomed relief but it still hurt, I thought from the beginning that I'd beat this thing. I know I'm being a baby but it depressed me all week-end.

 

[Sushi]

PNR2008

I'd also guess that in his comment he would be taking into consideration not only how long you have been sick, but what degree of disability you have had for how long. Many of us have been mildly ill for much longer than we have been seriously debilitated. Since I am one of this group, I am just choosing to think of it this way!

Sushi

 

[snowathlete]

I doubt he is writing off these longterm patients, I think he is just saying they are harder to resolve. I think that has to be true, but anything which gets us to an understand of the underlying cause will help increase all patients chances so try not to read it as a negative too much. I do think it will improve all our chances of improvement with those less severe, less complex cases being easier, but even those other cases should be treatable, even if more time to get less improvement. Either way, it signals a much improved situation than current!

 

[PNR2008]

I agree with Sushi and Snowathlete. My reaction was purely emotional plus a migraine messed up my brain chemistry these last few days. Calling drs for botox shots before a herd of them come through the gate and I loose the brain cells I already have. Thanks.

 

[Gijs]

I am very curious because de Meirleir have said many things in the past. I am a little sceptical. I think that there will be no change or breakthrough for ME/CFS in the next 10-20 years. I hope the Meirleir will be right this time.