MECFS & CIRS

[JasonPerth]

Does anyone with experience in the condition CIRS able to assist ? I personally hate illnesses that have the “95% diagnosis and success treatment rate” that is always told to you as a disclaimer.

I believe- If you have MECFS, and do CIRS diagnostic tests, you will likely be positive.

This is because the symptoms we have are just about identical to the ones a CIRS patient will have.

This is what confuses me, some CIRS practitioners say “CFS” is CIRS and that their protocol will cure us with removal of whatever got you sick.
And some say its , its own unique illness.

Is this just BS?

The only reason why i find suspicion, is because they have a diagnostic test. Although its not a biomarker, they claim 95%-98% accuracy if you fail the VCS, have a HLA gene, and an elovated Biotoxin like MmP9.

I did the protocol they had me go on, they said i would be better in 3-6 months, $10,000 later im no better and did everything they asked of me and then they were starting to question me asif i did something wrong?

I guess what im wondering, is. How many of us with MECFS, would fail the VCS test, have the HLA suspect Gene for “cfs” “cirs” and have an elovated marker like MMP9.

If that answer is many of us. does it mean they need to find a new biomarker diagnostic tool as the current one includes MECFS patients? Like me

Just seems so wrong for a MECFS patient to see a practitioner who practices CIRS therapy, for them to tell you “no you dont have mecfs, you have Cirs” and then for their protocol to not work at all whilst you wasted $$$$!?

 

[hapl808]

The only reason why i find suspicion, is because they have a diagnostic test. Although its not a biomarker, they claim 95%-98% accuracy if you fail the VCS, have a HLA gene, and an elovated Biotoxin like MmP9.

I did the protocol they had me go on, they said i would be better in 3-6 months, $10,000 later im no better and did everything they asked of me and then they were starting to question me asif i did something wrong?

I guess what im wondering, is. How many of us with MECFS, would fail the VCS test, have the HLA suspect Gene for “cfs” “cirs” and have an elovated marker like MMP9.

If that answer is many of us. does it mean they need to find a new biomarker diagnostic tool as the current one includes MECFS patients? Like me

Just seems so wrong for a MECFS patient to see a practitioner who practices CIRS therapy, for them to tell you “no you dont have mecfs, you have Cirs” and then for their protocol to not work at all whilst you wasted $$$$!?

This is my problem with all the CIRS stuff. I do think there's 'something' there, but neither their diagnostic tools nor their treatments have particularly high validated levels of success. We all know that many seem to promise 95% success rates - DNRS, CIRS, ME/CFS specialists, etc. And yet we always seem to be in that 5%.

I saw a Shoemaker protege. Did some testing, failed the VCS, no MaRCONs, did the high fish oil thing, then the CSM. No real reaction to CSM for the first week or two, then had an almost allergic reaction. The doctor was pretty uninterested.

In general, I hate the whole 'we can absolutely heal you' followed by 'if you didn't get better, then it's clearly your fault.' Since we're all suffering from something so weird and outside of our usual experiences, this method can be very effective at gaslighting us.

 

[Hoosierfans]

Does anyone with experience in the condition CIRS able to assist ? I personally hate illnesses that have the “95% diagnosis and success treatment rate” that is always told to you as a disclaimer.

I believe- If you have MECFS, and do CIRS diagnostic tests, you will likely be positive.

This is because the symptoms we have are just about identical to the ones a CIRS patient will have.

This is what confuses me, some CIRS practitioners say “CFS” is CIRS and that their protocol will cure us with removal of whatever got you sick.
And some say its , its own unique illness.

Is this just BS?

The only reason why i find suspicion, is because they have a diagnostic test. Although its not a biomarker, they claim 95%-98% accuracy if you fail the VCS, have a HLA gene, and an elovated Biotoxin like MmP9.

I did the protocol they had me go on, they said i would be better in 3-6 months, $10,000 later im no better and did everything they asked of me and then they were starting to question me asif i did something wrong?

I guess what im wondering, is. How many of us with MECFS, would fail the VCS test, have the HLA suspect Gene for “cfs” “cirs” and have an elovated marker like MMP9.

If that answer is many of us. does it mean they need to find a new biomarker diagnostic tool as the current one includes MECFS patients? Like me

Just seems so wrong for a MECFS patient to see a practitioner who practices CIRS therapy, for them to tell you “no you dont have mecfs, you have Cirs” and then for their protocol to not work at all whilst you wasted $$$$!?

So here’s my take having been down the CIRS rabbit hole — I even tore up and renovated my home (insurance did not pay for it) and spent 4 years treating w a CIRS specialist. We did the whole protocol (to the extent I could tolerate it), had the NeuroQuant done, the GENIE evaluation by Dr Shoemaker….the whole shebang.

My health just got worse. It didn’t get me anywhere except a lot of time and money wasted on expensive supplements and out of pocket testing and doc appointments.

I will say I got *some* useful info out of it — the Neuroquant showed things that a normal MRI does not. The GENIE test was interesting in terms of seeing certain genetic up regulations that now I’m using to compare against research that’s being done in post viral ME / CFS. And I’m using that to evaluate some pathways I may want to target.

But my overall take is one that I heard from another practitioner in the functional medicine world — be wary of a doctor or researcher that finds THE cause for ME / CFS / POTS / Post Lyme / Post COVID / CIRS …and then two years later they find another THE cause….and then another two years later find another THE cause.

His take on Shoemaker / Haymen and the CIRS corner of our world is that is what they do — first it was mold illness causing everyone’s CIRS, then it was this weird actinomycetes bacteria they magically “found” that explained everyone with CIRS. I’m not sure what their newest bad guy is. But it’s like WHAT??!!!

People absolutely have mold illness. And Lyme disease. But if you feel like someone is shoehorning you into a diagnosis / cause, trust your gut. I did not (ie I told them I never felt better in a “clean” environment or away from my home but they insisted it HAD to be mold) and I spent a lot of years down that rabbit hole.

 

[hapl808]

Yep, totally agree. And I think many of us likely individually have multiple causes. My health declines correlated with an EBV infection treated with prednisone (mild after that). Then either a pathogen in SE Asia or possibly the vaccines before the trip - that was a decline to moderate. Then an allergic reaction trigger a decline into more severe.

I think it's unlikely we'll find a unified field theory of ME/CFS. I personally think ME/CFS is itself a symptom, not a cause. PEM, brain fog, flares, etc. My guess is it is many different causes for similar downstream effects. I have no idea what an effective treatment will look like, or if it will only work for some cases. Right now I'm skeptical of anyone who claims good results, because in my experience lots of people can get better from mild or even moderate with lots of different paths - but very few improve that significantly from severe (back to moderate at best). I know there are exceptions, but I've seen very few. Most who recover, you find were moderate at most - still working, still walking around, etc.

 

[JasonPerth]

Love the responses, im glad im not alone. I got a few more MECFS patients to do a detailed CIRS questionnaire and all results showed “very likely”
Tells me all i need to know.
Our symptoms overlap. So we are positive for a condition we dont have.

Its a shame i went down this path earlier this year as i was so hopeful of potentially getting back to 100% health as it is what i was promised.

I have 0 mold in my house + air and still did not recover on their 95%-98% protocol and the quote of “you will be 100% in 3-6 months”

I feel sorry for anyone with MECFS eho will go to the same naturopath as i did and just waste money as their ME continues to deteriorate aswell as their pockets $

Such a shame this Naturopath used “CFS” as the title and link to CIRS to suck me in… im assuming they are that gullible to use the 98% rate, or its good business on their behalf even though its so so so morally wrong

 

[hapl808]

Our symptoms overlap. So we are positive for a condition we dont have.

We're 'positive' for a condition that is somewhat arbitrary in its description and treatment - so we may or may not 'have' it, as the treatment itself is not exactly robustly validated.

I feel sorry for anyone with MECFS eho will go to the same naturopath as i did and just waste money as their ME continues to deteriorate aswell as their pockets $

Over the years, I learned to have innate distrust for anyone who promises me a result. So far, 100% of those people have failed me. I'm still hopeful that one day I'll stumble across something, but to promise high success rates mostly means they are arrogant and don't listen to stories of failure. Selective memory.

I think many of us likely individually have multiple causes. My health declines correlated with an EBV infection treated with prednisone (mild after that). Then either a pathogen in SE Asia or possibly the vaccines before the trip - that was a decline to moderate. Then an allergic reaction trigger a decline into more severe.

Speaking of selective memory and brain fog and cognitive decline - I read this and thought, "Wow, that's exactly like me." Then looked and saw that it was exactly like me - because I wrote it. Ah well.

 

[Judee]

still did not recover on their 95%-98% protocol and the quote of “you will be 100% in 3-6 months”

Their complete confidence is always a red flag to me. I emailed a Fibro/ME doctor recently to see if there are any doctor's near me doing his protocol and he emailed me back saying I can be his patient and he will get me 85% better. 🚩