New Mella talk, exciting reveals

[Mariah]

I do hope they keep researching different treatments for people not responding to either Rituxan or Cyclo, so that we can all get better from this. Interesting talk nevertheless.

 

[Biarritz13]

Regarding vaccines, there is an increase in France of Macrophagic myofasciitis whose symptoms are very similar to ME/CFS, even Post/Chronic Lyme.

The biopsy of the deltoid muscle can only be done in Paris and I heard it's not very commun to do this examination in other countries.

What is the general view of this disease in the US and elsewhere? Is it considered like being ME/CFS or is it separated?

Thank you.

 

[Gijs]

As long as they don't have objective markers to seperate the responders, this drug will not be allowed for CFS patiënts in the rest of the world. I am not so optimistic that they already have found these markers,

 

[jaybee00]

Thank you for this Marky....

 

[taniaaust1]

That´s really interesting. It must be of great importance to know what the effects of the two SNP´s might be. If the SNP´s were present only in those with ME with other family members affected, there should clearly be two evident groups of patients.

I bet the genes they have found are also involved in some other medical conditions. The side of my family which gets ME has celiac disease, autism and mast cell disorder all on that side of the family

 

[taniaaust1]

I wish someone would study my family, we've had 4 affected members, 3 on disability and other can only work part time, youngest was 17 when she got ME/CFS and ended up bedbound, the others of us got it in our 20s (so possibly hits those in ME families earlier?). There is definately a genetic component involved, It hit my grandmothers children at a rate of around 25% of them 4 out of 17 grandchildren (all females were affected).

 

[Seven7]

I hope they don't use saline as placebo. WHat worries me in ME/cfs IVs are like a temporary cure. For those of us that get IVs knows how much better they make us. So it worries me that it will throw off the statistical significance.

Does anybody knows what they use as placebo?

 

[A.B.]

I hope they don't use saline as placebo. WHat worries me in ME/cfs IVs are like a temporary cure. For those of us that get IVs knows how much better they make us. So it worries me that it will throw off the statistical significance.

This is irrelevant in the long term.

 

[lauluce]

they dont think its hibernation like navieaux, but that it is a battle in the body to overcome the energy defect. therefore light sensivities etc.

he didn't say hibernation, but actually "dauer-like state". Dauer is an hypo metabolic state displayed by certain nematodes when environmental conditions are hard, like when food is scarce.

 

[Marky90]

he didn't say hibernation, but actually "dauer-like state". Dauer is an hypo metabolic state displayed by certain nematodes when environmental conditions are hard, like when food is scarce.

Right

 

[Sean]

Living in warm climate all my life didn't stop me from having very severe ME.

Nor me. I have lived almost all my life in the seasonal monsoon tropics of Australia. Coldest it gets inside my house is about 19-20 C.

And feeling better in the warmth? That's the opposite of my experience, after enduring many hot Australian summers.

Warm to a northern European, and warm to an Australian, are probably two very different standards.

 

[Mariah]

Did they say anything about whether the maintenance infusions increase your chance of an overall response at all or if they are just there to maintain a response (and possibly make the response better) @Marky90 ? My doctor has told me that the extra maintenance infusions don`t increase your chance of a response, but just enhance and maintain a response, and that it is the two first, main infusions that actually provides a response. But then I heard someone say that Mella said that the maintenance infusions was "important" and wondered what he meant by that. Did he mean for a response at all or just important for maintenance? I don`t see any arguments for the former from the allready published studies.

 

[JaimeS]

Ha! This is what we've been saying on PR too.

There is an actual study on this in teens with ME. Unsurprisingly, when given clonidine they basically melted into puddles on the floor. The adrenaline was the only thing that kept them going. (Though maybe this IS the study you're referring to?) I keep this one in my back pocket for all those "it's just anxiety" folks.

he didn't say hibernation, but actually "dauer-like state". Dauer is an hypo metabolic state displayed by certain nematodes when environmental conditions are hard, like when food is scarce.

In an email, Mella said:

We totally agree that there is hypometabolism in ME/CFS (although it may be a more selective hypometabolism than proposed by the paper), but we are not convinced that this is caused by hibernation or a dauer-like condition.

Since he clearly said something very similar in public, I believe it's all right to mention.

Basically his argument was that there are a lot of markers that are elevated, so it's hard to call it hypometabolism overall.

-J

 

[Sidereal]

There is an actual study on this in teens with ME. Unsurprisingly, when given clonidine they basically melted into puddles on the floor. The adrenaline was the only thing that kept them going. I keep this one in my back pocket for all those "it's just anxiety" folks.

Yes, that's what I am saying. We have had multiple threads here about Wyller (who was the lead on the clonidine study) and his inability to grasp that the high sympathetic tone is not due to "stress".

 

[aimossy]

I tried clonidine years ago and ended up on the floor too

 

[JaimeS]

Yes, that's what I am saying. We have had multiple threads here about Wyller (who was the lead on the clonidine study) and his inability to grasp that the high sympathetic tone is not due to "stress".

I think we're talking about two different studies then for sure, Sidereal. The authors concluded that the slightly but statistically-significantly elevated adrenaline was a compensatory mechanism to deal with lower energy. That was the conclusion the paper reached!

What struck me was how willing the authors were to change their POV when confronted with evidence that contradicted their initial opinion. I wondered why everyone can't be that flexible.

-J

 

[Tuha]

Are these metabolic findings which we can see comming in the last months really that significant? i gave the Naviaux´s paper to read to 2 scientists outside ME field and they told me that it looks interesting but it´s not enough to do any conclusion and this paper needs much more to convice the scientific community.

I tried to argument tht look there are significant metabolic findings but they were just laughing about me that I see it too simplistic. Well that´s true - they are my friends and I dont know anything about science. However it´s really exciting but I wish to understand more.

 

[Neunistiva]

In an email, Mella said:
We totally agree that there is hypometabolism in ME/CFS (although it may be a more selective hypometabolism than proposed by the paper), but we are not convinced that this is caused by hibernation or a dauer-like condition.

I think this is just a misunderstanding of what Dr. Naviaux said, which media is mostly to blame for due to their imprecise reporting. He said it is metabolic signature of ME/CFS that is similar to metabolic signature seen in dauer state.

That is all that he said. He never said we are in any form of dauer or hibernation condition. For the dauer worm the metabolic signature is caused by natural mechanism of survival, for us the metabolic signature is caused by the disease.

 

[Marky90]

Did they say anything about whether the maintenance infusions increase your chance of an overall response at all or if they are just there to maintain a response (and possibly make the response better) @Marky90 ? My doctor has told me that the extra maintenance infusions don`t increase your chance of a response, but just enhance and maintain a response, and that it is the two first, main infusions that actually provides a response. But then I heard someone say that Mella said that the maintenance infusions was "important" and wondered what he meant by that. Did he mean for a response at all or just important for maintenance? I don`t see any arguments for the former from the allready published studies.

hey, he did not talk about that.. i know they thought that the mainteinance infusions mainly serve to maintain responses, but i guess you cant really know for sure when the responses come very late.

 

[Marky90]

I think this is just a misunderstanding of what Dr. Naviaux said, which media is mostly to blame for due to their imprecise reporting. He said it is metabolic signature of ME/CFS that is similar to metabolic signature seen in dauer state.

That is all that he said. He never said we are in any form of dauer or hibernation condition. For the dauer worm the metabolic signature is caused by natural mechanism of survival, for us the metabolic signature is caused by the disease.

Yea..

"NEW STUDY SHOWS PATIENTS ARE MORPHING INTO ZOMBIE WORMS"