New Mella talk, exciting reveals

[Neunistiva]

I live in South Europe, too. And I have this disease. Nevertheless, it may be something similar to what we see in MS: the higher the latitude, the higher the prevalence. Or it may be something linked simply to thermodynamics: in warmer climates you have to spend less energy in thermic regulation, so you have more ATP to spend for other functions. I don't know.

You are absolutely right that it might be medically connected to latitude or climate. But I think it's too early to make that conclusion while we are at this stage where 90% of patients are not yet disgnosed, and those that are diagnosed are all self-taught ME/CFS experts.

Imagine not being able to read PR, Cort Johnson, Open Medicine Fundation, Me Action, ICC, CCC... how would we even know this illness existed, let alone how to diagnose it?

A while ago I noticed that the map of world prevalence of ME/CFS is actually a map of aptitude at English language: https://www.diseasemaps.org/en/chronic-fatigue/

 

[Helen]

Found two genetic abnormalities in families with ME

Did he talk more about these? Was this not the fact in patients without relatives with ME? Thank you for all the work with sharing the lecture.

Edit: @Neunistiva , connections to latitude or language could also be that that certain SNP´s are more present in particular groups of people

 

[Marky90]

Hi @Marky90
Great work to get the summary out so quick !

A couple of questions, if you don't mind.

When you say rtx halved in current study, which study are you referring to ?

Also, apart from treatment trial results, ( which are encouraging ) it seems F&M are shedding light on mechanism or at least what they believe might be a mechanism. ( ATP, lactic acid, metabolites etc. ) Did they indicate if they would have any specific papers on this topic ?
Presumably they have run some trials we are not fully aware of?

Thanks again.

My pleasure!

1. Phase 3. They want to bring down the cost of treatment, as that heightens the chance of everyone getting it.

2. Yes that paper is currently pending, as far as i could understand.

3. Well not trials, but research using collected data from the rtx- participants.

 

[Marky90]

I started crying while reading this. Not sure why. But very very promising and just clear science. Not this BS we've been listing to for decades. Thank fudging God.

Yes their research is truly a beacon of warranted hope

 

[Marky90]

Did he talk more about these? Was this not the fact in patients without relatives with ME? Thank you for all the work with sharing the lecture.

Edit: @Neunistiva , connections to latitude or language could also be that that certain SNP´s are more present in particular groups of people

Well as i understood there were two specific genes. they were going to look into what the abnormal parts of it translates to in terms of consequences for function.

Edit: No it was patients with relatives with ME im quite sure

 

[Comet]

Thank you @Marky90 for reporting this to us so quickly! This sounds so hopeful!

 

[Helen]

Well as i understood there were two specific genes. they were going to look into what the abnormal parts of it translates to in terms of consequences for function.

Edit: No it was patients with relatives with ME im quite sure

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.

 

[Neunistiva]

connections to latitude or language could also be that that certain SNP´s are more present in particular groups of people

The language one would REALLY be a stretch. The reason why a Dane, an Australian and I know English well are too different to connect us genetically. (Scandinavian languages are similar to English so they learn it easily, former English colonies have historical connection to English, and I am simply a straight A student who studied English A LOT and has absolutely no connection to any English speaking country).

Just look at Japan. They are one of the most active countries in terms of ME/CFS research and only one patient put themselves on the map there.

But anyway, this is going off topic. I am really excited about metabolic findings, this is 4th study with similar results so far!

 

[Hip]

Mella: this is why patients get lactic acid. when people e.g. run, atp-production increases by 70-80 fold, so even small defects can have big consequences.
one patient had 4 times more lactic acid when standing

This increased lactic acid production ties in with the list of supplements (see this post) that members have found significantly mitigate PEM: nearly all of these "PEM Buster" supplements act to reduce lactic acid.

 

[Hip]

But you will be so kind to translate it for us... No, I am just joking. Thanks for your update!

If you upload a video to YouTube, it automatically transcribes the video audio track into text (for subtitle purposes). You can then download this text, and Google translate it to English.

 

[Thomas]

Vaccines implicated...again They are amazing ME/CFS triggers.

Interesting lecture for sure. At this point it's all about finding out who will respond to what to take the friggin guessing game out of this already (i.e. RTX, Cyclo, Ampligen, etc)

 

[Hip]

Vaccines implicated...again

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.

 

[Thomas]

According to Dr Chia's investigations into the case histories of 200 consecutive ME/CFS patients, only around 1.5% of patients have 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.

Yes I saw that. I actually didn't even realize it was a vaccine that may have caused my ME as I just figured I caught a bad virus. It was Dr. Hyde who suggested it to me. He says he sees it very often in his practice. Whether it's 100% true that it was actually the vaccine or not, nobody really knows.

 

[Grigor]

Vaccines implicated...again They are amazing ME/CFS triggers.

Interesting lecture for sure. At this point it's all about finding out who will respond to what to take the friggin guessing game out of this already (i.e. RTX, Cyclo, Ampligen, etc)

Next month we'll hear about who will respond to Ampligen and Rituximab. Forgot the name of the conference. Sorry.

 

[A.B.]

If you don't respond to Rituximab, you may respond to Cyclophosphamide.

The energy generation problem is presumably homogeneous, regardless of Rituximab / Cyclophosphamide response. If there were two distinct groups here he would have probably highlighted this.

This is all very encouraging. The Naviaux paper and this information here both suggest ME/CFS may be more homogeneous than we thought.

 

[Thomas]

Next month we'll hear about who will respond to Ampligen and Rituximab. Forgot the name of the conference. Sorry.

Yes. You're referring to the IACFS conference later this month in Florida. I'm not certain these revelations of who will respond to what are going to be as revealing or groundbreaking as we hope. I've been wrong before though and I hope I am now.
Hopefully the results will be actual blood markers of response and not subjective things like NKC function, deactivated viruses and treadmill tests again in the case of Ampligen

 

[Sushi]

Pretty certain: more in north europe, than south europe. but it happens all over the world. a lot of patients feel better in warmer climate."

There is also the possibility of genetic differences due to region--Viking genes. They also visited much of the world sharing their genes.

 

[Marky90]

There is also the possibility of genetic differences due to region--Viking genes. They also visited much of the world sharing their genes.

"visited"

 

[Kati]

@Marky90 I suspect that this presentation went without a hitch and the presenters did not fear for their safety ? Amazing what good science does to scientists...

 

[BurnA]

@Marky90 I suspect that this presentation went without a hitch and the presenters did not fear for their safety ? Amazing what good science does to scientists...

No broken coffee cups then ?