Anyone here keep up on the Phoenix rising forum ME chronic fatigue? (Some related info there)

I know there used to be comments here about that forum. I used to visit it once in a while. There’s some pretty brainy types over there and some of their info was somewhat over my head. Some of which is somewhat related to and possibly useful to us, so that’s why I’m asking.

And of course since it’s another chronic illness, I’m kind of wondering if they’re getting any better with it which is related to my other recent post. Or is modern medicine still ignoring them just like they do to us?

They gave them a label so They don’t have to do anything more right? (sarcasm)

Post Edited (astroman) : 9/11/2022 12:47:29 PM (GMT-7)

I follow occasionally as well.

I feel our two groups will overlap significantly whenever this stuff is far more figured out in the future.

Unless each one of them has taken 6+ Lyme tests - how do you know for sure? I tested negative that many times before another doc forced me to do her tests to work with her. Maybe some cutting edge genetic testing (genie)? but that’s not even out enough yet.

There’s also been data around something like 90%+ of CFS patients test positive for mycotoxin urinalysis.

As Garzie said the markov stuff is interesting. Markov claims this eliminates CFS of Lyme patients too. Haven’t found anyone to back that but..

some good and well intentioned people there - they are certainly not all bad

they are really just in the same boat as us in the Lyme community - something very wrong - conventional medicine does not understand it - gives it a bogus name - will not treat them - so they are left to thier own devices
just like most of us

we have decided to go more down the Lyme rabbit hole
they have decided to go down the ME/CFS rabbit hole

no one knows who is right

i tend to agree with Loski though - that there is likely to be a good deal of cross over

i try to focus on the positives rather than be critical of the people there - after all they probably look at us in the lyme community and tend to thing we are somehow delusional believing that everything is caused by lyme.

i do understand what you mean that the community there can seem a little closed to different ideas - as they may be quite heavily invested in some alternate ideas already. i have had experiences like that when trying to present the case for hard to detect tick born infections that match a lot of the symptoms they experience - but we all suffer from that phenomenon

eg try telling someone here who beliefs all their symptoms are babesia or mold (or bartonella in my case) - that their issues are all due to unseen undetected viruses - or and you would typically get some push back on that too

often our sense of hope for the future is tied to the story we tell ourselves around the cause of our illness and the expectations we have for treatment and what our future hold based on this belief - so if you throw doubt on these beliefs - its common for people to react as if threatened.

the internet age has increased the separation of the information bubbles we all exist in ( we are exposed mostly to sources of information that are consistent with the beliefs we already hold - eg by the way in which search engines and social media work) and this has made people more polarised and reactive. just try having a discussion about politics, or the environment or brexit - and you will see what i mean.

i like to think that if people with differing beliefs can learn to converse with each other - learn from each other - openly and respectfully without retreating to our entrenched viewpoints and criticising others then we will all be better off

in my own experience there is some interesting stuff coming out from this type of interaction with the people there recently - some of which relates to us in the chronic lyme world.

for instance - there is some chance that people with Lyme - esp those with PEM may have the same type of thing going on as in CFS - and there is some new evidence the CFS may be caused by a biofilm community in the kidneys
there is also some new research showing that bacteria can and do evolve significantly inside a single host in a single lifetime - leading to adaptations that increase immune evasion.
this could well be happening in Lyme and co - and explain some of the extreme difficulties in treatment we see

So, what was the cure? Was this the auto vaccine thing?

Alleged cure. Purported cure. Cure du jour.

I suspect anyone who says they've discovered THE cause of ME/CFS likely does not understand it fully.

For the great majority of ME/CFS sufferers, there is no cure yet

Post Edited (duncan) : 9/12/2022 10:35:46 AM (GMT-7)

Garzie, so yes, I suppose progress is being made. As for bio markers, you learn to take everything with a grain of salt.

ME/CFS is likely composed of subsets, much like it seems recently MS is. Different pathogens, different causes that are nonpathogenic, eg channelopathies etc,, that all elicit or create a similar creature we afix an ME/CFS label to.

For a subset, it may be a biofilm in the kidneys. For some, it may be sero-negative neuroLyme. Others an enterovirus, or a herpes virus or mold or vaccine insult or autoimmune disorder....BTW, can we cure neuroLyme after being infected w/o treatment for more than six months?

And yes, late stage Lyme sufferers do share so many symptoms with pwME . pwME would say we don't have PEM or they don't have swollen joints. But I don't know. Ask the right questions and the commonalities are striking. Sometimes we get lost in the semantics. I certainly do.

Post Edited (duncan) : 9/12/2022 11:21:44 AM (GMT-7)

I'm sorry but i cannot figure out how to copy what someone posts here.

I agree with you. I actually have had this discussion over the years with peeps on PR and the UK forum as well. The same holds true for MS, right? Should that now be called EBV in many cases instead of MS? So if you ask Chia about ME/CFS he will tell you in reality it's an enterovirus. Peterson would likely say a herpes virus. That Belgium guy whose name escapes me would until recently say Lyme, but evidently now would say b Miyamotoi. The Aussies a calcium channelopathy. Shouldn't in each of those subsets ME/CFS be renamed if that cause can be demonstrated. Only of course, it cannot with any reliable consistency since medical testing is a reprehensible failure when it counts far, far too frequently.

Medicine when it's not inclined toward inertia, is gripped by lethargy. Maybe someday names like ME/CFS and MS will be retired in favor of more accurate ones, but I'd wager not anytime soon.

The MS and Lyme commonality is what’s sometimes found in the brain.

I’ve gone to a local MS meeting basically told them everything I knew about the gut and immune system and everything else and these people are blown away. Modern medicine has completely sold that group to the thought that there’s nothing they can do.

I went there just in case I could learn something about immune system from some smart MS people, Nope!

And what were they doing in their meeting ?....eating cookies and cupcakes. A lot of them.

When it was time to leave , only one guy out of the 20 people there actually had an interest in what I had to say, he Totally understood and was kind of going down the same trail. The rest were clueless And pretty much there for mental support versus actually trying to figure out how they could treat their symptoms or cure it.

I’ve gone to a fibro meeting too, they actually had some interest in science and some interesting things to listen to.

duncan said...
I'm sorry but i cannot figure out how to copy what someone posts here.

Shouldn't in each of those subsets ME/CFS be renamed if that cause can be demonstrated. Only of course, it cannot with any reliable consistency since medical testing is a reprehensible failure when it counts far, far too frequently.

yes, exactly

its possible there are some commonalities underlying some of these subsets though -
they found borrelia in the brains of MS patients too - so was that involved in allowing the EBV to reactivate enough to get inflammation going and cause MS
similar could apply to chronic retroviruses - e why are these not cleared by some people - when most of the population manages to - has something damaged or unbalanced the immune system so it no longer can

so there could well be some common threads woven in there amongst apparently different causes / aetiologies
it may well be a bit more complex than these 6 things all cause ME/CFS via separate mechanisms

in the meantime i think we all have to learn to live with less than absolute black and white answers and deal instead in terms of probabilistic ones - so we can at least move forward with the things that ae most likely to help us in formulating an action plan for our own individual cases - otherwise we stay frozen in a kind of confusion paralysis and inaction - which can not help us.

after all, we deal with uncertainty in other big life decisions and just get on with it - eg who to marry and what job to go into etc

duncan said...
Alleged cure. Purported cure. Cure du jour.

I suspect anyone who says they've discovered THE cause of ME/CFS likely does not understand it fully.

For the great majority of ME/CFS sufferers, there is no cure yet

I summarized it in my words. You can go google it. The doctor himself says 93% cure rate. And he defines what cure is it’s just like it sounds. This is over a period of 10 years just to make sure, so he is actually doubting himself to some extent versus overstating his claim.Am I number may be a little off but I think I read it was just under 4000 people in his trial, his patient list.

Garzie said...

duncan said...
I'm sorry but i cannot figure out how to copy what someone posts here.

Shouldn't in each of those subsets ME/CFS be renamed if that cause can be demonstrated. Only of course, it cannot with any reliable consistency since medical testing is a reprehensible failure when it counts far, far too frequently.

"yes, exactly

its possible there are some commonalities underlying some of these subsets though -
they found borrelia in the brains of MS patients too - so was that involved in allowing the EBV to reactivate enough to get inflammation going and cause MS
similar could apply to chronic retroviruses - e why are these not cleared by some people - when most of the population manages to - has something damaged or unbalanced the immune system so it no longer can "

Yes, Parkinsons too and Alzheimers. Was it MacDonald each time? I cannot recall. Tom Grier was involved at some point too recently it seems.

Yeah, endogenous retroviruses are weird. Just as potentially relevant - or not - are exogenous ones like XMRV. Remember that mess? I recall when chronic Lyme = Lyme plus XMRV.

astroman said...

duncan said...
Alleged cure. Purported cure. Cure du jour.

I suspect anyone who says they've discovered THE cause of ME/CFS likely does not understand it fully.

For the great majority of ME/CFS sufferers, there is no cure yet

"I summarized it in my words. You can go google it. The doctor himself says 93% cure rate. And he defines what cure is it’s just like it sounds. This is over a period of 10 years just to make sure, so he is actually doubting himself to some extent versus overstating his claim.Am I number may be a little off but I think I read it was just under 4000 people in his trial, his patient list.

"

All these clinician/researchers sound convincing. Who knows? Maybe he is right. But I lean more than a little on skepticism. Perhaps too much.

astroman:

https://www.nature.com/articles/d41586-022-02286-7

This is a link to microclot stuff. The ME/CFS researcher tied to the long covid microclot efforts is Maureen Hanson,

Post Edited (duncan) : 9/12/2022 1:00:09 PM (GMT-7)