New Mella talk, exciting reveals

[Snow Leopard]

Yea..

"NEW STUDY SHOWS PATIENTS ARE MORPHING INTO ZOMBIE WORMS"

You forgot the smilies!

 

[lansbergen]

. It's probably still the same immunological process that goes wrong (flu vaccine vs flu infection).

Very likely

 

[JaimeS]

Would this be what is behind the "wired but tired" symptom we so often have? That makes sense to me.

I am so happy to see all of this now coming together.

Thank you @Marky90 for your detailed note taking!

Speculation, but I'd say cortisol or adrenaline has got to be related to that jittery feeling, and several studies have found adrenaline to be slightly elevated in ME patients.

 

[Effi]

Speculation, but I'd say cortisol or adrenaline has got to be related to that jittery feeling, and several studies have found adrenaline to be slightly elevated in ME patients.

I am wondering if this excessive production of adrenaline ultimately leads to some sort of 'adrenal fatigue', which is (or actually: used to be?) a popular diagnosis, as if it were the cause of our symptoms, when in fact it's just another side-effect...

 

[JaimeS]

I am wondering if this excessive production of adrenaline ultimately leads to some sort of 'adrenal fatigue', which is (or actually: used to be?) a popular diagnosis, as if it were the cause of our symptoms, when in fact it's just another side-effect...

Had extensive testing at Mayo and other places -- my adrenals are doing okay! It's the H and P part of my HPA axis that are malfunctioning... so, the brain.

That said, I am 100% certain that for some PWME, their adrenals are kaput. Those who benefit significantly from cortisol supplementation are likely in this category.

 

[CFS_Kristin]

According to Dr Chia's investigations into the case histories of 200 consecutive ME/CFS patients, only around 1.5% of patients had a vaccine trigger. So vaccination would not appear to be a major cause of ME/CFS. But it is certainly an interesting cause, worthy of investigation.

My CFS started after I got my Flu Shot. I had not gotten it in my early twenties for maybe 5 years, was perfectly healthy and then 2 years ago got it in November. All of December I was extremely run down, felt like I was coming down with something. Then I developed a fatigue every morning for a few months. 2 months later I got the flu, and then all hell broke loose. But I 100% know this all started after my flu shot.

 

[Snow Leopard]

That said, I am 100% certain that for some PWME, their adrenals are kaput. Those who benefit significantly from cortisol supplementation are likely in this category.

I haven't really seen any evidence of adrenals being kaput or benefit from cortisol (beyond the immunosuppression effect) in most patients. All of the neuroendocrine studies I have seen do not suggest adrenal damage is a key issue.

The exception being those with Addison's disease (which is usually an exclusionary diagnosis).

 

[Kati]

I haven't really seen any evidence of adrenals being kaput or benefit from cortisol (beyond the immunosuppression effect) in most patients. All of the neuroendocrine studies I have seen do not suggest adrenal damage is a key issue.

The exception being those with Addison's disease (which is usually an exclusionary diagnosis).

I would really like to have answers on the endocrine side. I have been twice tested for Addison, and I do not have that disease. However my morning cortisol is under normal, and at some point was quite acutely low, but the ACTH challenge test was normal and I did not respond to Cortef (nor did the Cortef made me better).

I hate the term 'Adrenal fatigue'. This is not a mainstream medicine term.

I just hope that scientists who are begining to understand this disease most can explain the hormonal imbalances.

 

[Effi]

I hate the term 'Adrenal fatigue'. This is not a mainstream medicine term.

I agree, I don't like it either. But for some time it was a term that was being used a lot, even by some doctors, but I've always seen it as just another wastebasket diagnosis for 'unexplained fatigue'. I wonder if it went out of fashion, cause I haven't heard it in a while. I hope so!

 

[justy]

This talk is fabulous (despite the google translate). So much to think about in there and it seems we are getting closer...unfortunately my 'between the ears' is not working too well, and even though I have just read it I cant remember the interesting points I wanted to talk about.

 

[lauluce]

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.


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

I feel worse both with warm and cold weather

 

[Gingergrrl]

Hey! No, nothing specific. Just that Charite did innovative research in a country with a ancient understanding of ME.

Thanks @Marky90 and I was just curious if they had mentioned more re: the autoantibodies or the work at the Charite or Cell Trend Labs? No kidding about Germany doing innovative research and I am certain it is going to end up helping me if I live long enough to see it through.

 

[Hip]

I have just been wading through some of Dr Sarah Myhill et al's original studies on mitochondrial and energy metabolism dysfunction in ME/CFS, and posted a new thread summarizing the findings:

The ME/CFS Mitochondrial and Energy Metabolism Dysfunction Papers of Dr Sarah Myhill et al

The Myhill et al papers have not be adequately covered on this forum, for some reason; now with this new rash of studies finding energy metabolism defects in ME/CFS, these Myhill et al papers make very good reading.

 

[MEMum]

Could Vit D levels have an influence here? Those able to go out and live in sunnier climes, may do better than those in cloudier/cooler places?

 

[MEMum]

I found these studies v interesting too.
ME Association is doing a study in Oxford area, trying to validate the Acumen tests.
I met a Dr at the IiME conference, who is working on this.

 

[hixxy]

Could Vit D levels have an influence here? Those able to go out and live in sunnier climes, may do better than those in cloudier/cooler places?

Prevalence of ME in Australia seems to be pretty high and we have no shortage of sun. I actually can't go out in the sun much it makes me feel horribly unwell.

 

[lauluce]

I have just been wading through some of Dr Sarah Myhill et al's original studies on mitochondrial and energy metabolism dysfunction in ME/CFS, and posted a new thread summarizing the findings:

The ME/CFS Mitochondrial and Energy Metabolism Dysfunction Papers of Dr Sarah Myhill et al

The Myhill et al papers have not be adequately covered on this forum, for some reason; now with this new rash of studies finding energy metabolism defects in ME/CFS, these Myhill et al papers make very good reading.

I´ve seen many people stating that they're not accurate at all or even a fraud. I personally found them very interesting and worthy of consideration, what do you think?

 

[Hip]

I´ve seen many people stating that they're not accurate at all or even a fraud. I personally found them very interesting and worthy of consideration, what do you think?

There are some very cynical opinions on the work of Myhill et al, which I think are completely unfair.

I have to admit, like most people on this forum, I did not take much notice of the mitochondria research of Myhill, Booth and McLaren-Howard when it was first published in 2009, some 7 years ago now. For some reason, the idea that ME/CFS could in part be caused by mitochondrial and energy metabolism dysfunction did not really "click" with me at the time.

I guess that may be because at that time I was more interested in possible viral and inflammatory cytokine explanations of ME/CFS symptoms.

However, now with the work of Fluge and Mella as well as Robert Naviaux et al finding defects in the energy metabolism of ME/CFS patients, I am looking at Myhill et al's work with fresh eyes, and I think their work is incredibly interesting. The idea that mitochondrial dysfunction plays a major role in ME/CFS suddenly seems to make a lot sense, and ties together some of the facts that we know about ME/CFS.

I would think that mitochondrial dysfunction may not be responsible for all the symptoms of ME/CFS; perhaps there is also a contribution from inflammatory cytokines disrupting metabolism and the brain.

But I think it is high time people start to look at Myhill et al's work, because rather inexplicably, it has been neglected and sidelined; my feeling is that Myhill, Booth and McLaren-Howard are definitely onto something — something that in the next few years, and with the aid of further studies, we may discover is the central cause of ME/CFS.

 

[lauluce]

There are some very cynical opinions on the work of Myhill et al, which I think are completely unfair.

I have to admit, like most people on this forum, I did not take much notice of the mitochondria research of Myhill, Booth and McLaren-Howard when it was first published in 2009, some 7 years ago now. For some reason, the idea that ME/CFS could in part be caused by mitochondrial and energy metabolism dysfunction did not really "click" with me at the time.

I guess that may be because at that time I was more interested in possible viral and inflammatory cytokine explanations of ME/CFS symptoms.

However, now with the work of Fluge and Mella as well as Robert Naviaux et al finding defects in the energy metabolism of ME/CFS patients, I am looking at Myhill et al's work with fresh eyes, and I think their work is incredibly interesting. The idea that mitochondrial dysfunction plays a major role in ME/CFS suddenly seems to make a lot sense, and ties together some of the facts that we know about ME/CFS.

I would think that mitochondrial dysfunction may not be responsible for all the symptoms; perhaps there is also a contribution from inflammatory cytokines disrupting metabolism and the brain.

But I think it is high time people start to look at Myhill et al's work, because rather inexplicably, it has been neglected and sidelined; my feeling is that Myhill, Booth and McLaren-Howard are definitely onto something — something that in the next few years, and with the aid of further studies, we may discover is the central cause of ME/CFS.

I concur with you, considering the recent studies pointing to metabolic disfunction, we should pay atention to all studies related to that area of research. At the time the myhill studies came out, I was very interested in them since they not only pointed at possible factors contributing to the disease aetiology buy also proposed a potential treatment based on high dose nutritional supplements aimed at improving mitochondrial function, namely d-ribose, l-carnitine, coenzyme Q10, among others. By the way, could you please explain what "et al'" means?

 

[Hip]

potential treatment based on high dose nutritional supplements aimed at improving mitochondrial function, namely d-ribose, l-carnitine, coenzyme Q10, among others.

While this nutritional approach may be worth trying, my guess is that mitochondria may be dysfunctional in many cases of ME/CFS due to autoantibodies which attack them. So this might explain why rituximab works for some ME/CFS patients. So I think now there should be more research into what might be inhibiting mitochondrial function in ME/CFS, and in particular, what autoantibodies might be involved.

By the way, could you please explain what "et al'" means?

Et al is a Latin phrase meaning "and others." It's usually used when a paper involves a number of researchers, but you don't want to list everyone's names all the time, so you say Myhill et al, or Booth et al.