2 types of ME/CFS? A short, informal poll

[stevesayshi]

I don't propose I have *the* answer or anything, but I am wondering if there might be 2 distinct branches to the ME/CFS "family tree" of diseases. I say diseases plural because there are so many distinct and opposite reactions to treatment protocols etc that there have to be a few different underlying processes causing overlapping symptoms. (I don't think this is too controversial a view; I am saying ME/CFS is not A real thing but rather a FEW or perhaps SEVERAL real things)

That said, here are my questions. I don't want to bias anybody so I will wait a little while to propose my hypothesis.

Did you have IBS before or early on in your symptoms?

Do you have sinus problems?

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded)

Do you have MCS?

If you have tried it, did you get lasting benefit from LDN?


I expect 2 main distinct patterns of yes/no answers but I won't say what they are just yet thanks!

 

[justy]

1. IBS - arrived at the same time as other symtpoms

2. sinus issues on and off

3.recent blood work shows autoimmune antibodies (low titres, speckled pattern, no specific diagnosis)

4. MCS - to varying degrees, not severe but noticeable.

5. LDN - never tried it

 

[Hanna]

Did you have IBS before or early on in your symptoms? YES

Do you have sinus problems? NO

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) maybe YES (auto anti bodies)

Do you have MCS? YES

If you have tried it, did you get lasting benefit from LDN? not tried yet

 

[JBB]

1. No
2. No
3. Reticulin R1+ (associated with gluten) but no extensive tests here. I know my immune system is compromised.
4. Not obvious if I do.
5. Not tried it.

 

[helen1]

1. Yes
2. No
3. No
4. No
5. Not tried

 

[Mij]

Did you have IBS before or early on in your symptoms? NO

Do you have sinus problems? NO

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) NO

Do you have MCS? NO

If you have tried it, did you get lasting benefit from LDN? YES, NO benefit.

 

[Mij]

Just from own experience talking with people who have ME is that the 2 differences in symptoms seem to differ within the slow and sudden onset.

 

[catly]

Did you have IBS before or early on in your symptoms? NO

Do you have sinus problems?NO, but I do get a histamine reponse where my sinuses become congested when I am over exhausted, usually at the end of the day if it happens at all (and it's not associated with anything I eat).

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded). Yes, confirmed Hashimotos, +ANA, low +CCP

Do you have MCS?. No, I have no problems taking any meds/supplements, nor any issues with scents, perfumes, candles etc.

If you have tried it, did you get lasting benefit from LDN? Don't know. I've been on it for a little over a year, can't tell if it's helping or not, but I am a little bit better than last year.

 

[Sushi]

Did you have IBS before or early on in your symptoms? No

Do you have sinus problems? Did have, but gone with ME treatment.

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) Don't know--from what my doc thinks, quite likely but not shown by the usual markers.

Do you have MCS? No

If you have tried it, did you get lasting benefit from LDN? Yes

 

[xrunner]

1. No (I only had a virus/bowel symptoms for a few weeks when I fell ill)
2. No
3. No
4. Yes, I did but not any longer
5. Not tried it

 

[Scarecrow]

Did you have IBS before or early on in your symptoms? Yes, about 6 years before sudden worsening
Do you have sinus problems? On and off pressure, constant PND
Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) Not that I know of.
Do you have MCS? After the IBS and for the first few years following sudden worsening.
If you have tried it, did you get lasting benefit from LDN? N/A

I'm intrigued.

 

[brenda]

Did you have IBS before or early on in your symptoms? NO.

Do you have sinus problems? OCCASIONALLY.

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) YES

Do you have MCS? YES

If you have tried it, did you get lasting benefit from LDN? N.A.

 

[Hell...Hath...No...Fury..]

No to all. Though i did have an almost constant blocked nose for the first year.

6 month grandual decline from virus... Then severe fast decline within 2 weeks after tetanus jab which finished me off completely

 

[shah78]

I had weak digestion ,sinus/allergies and MCS even before the shit hit the fan at age 26,and my life as I knew it ended. No AI or LDN.

 

[*GG*]

That said, here are my questions. I don't want to bias anybody so I will wait a little while to propose my hypothesis.

Did you have IBS before or early on in your symptoms? Yes, seems much better now. Due to LDN or supplements that help my Neurotransmitters?

Do you have sinus problems? Yes, but not sure if it is because of my CPAP machine?

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) Not that I am aware of, but I do have a couple of cousins with Autoimmune diseases

Do you have MCS? Not officially, but I do have sensitivity to chemical smells!

If you have tried it, did you get lasting benefit from LDN? Have not stopped LDN since 2009, but might stop it soon, and see what happens!

GG

 

[daisybell]

1. No
2. No but I get a lot of pain in my face now even though my sinuses aren't blocked
3. Yes
4. Yes but mild - I steer clear of lots of chemicals.
5. Never tried.

 

[AndyPandy]

1. Yes, early on and continuing. Not before ME.
2. Yes, occasionally before and since ME.
3. Possibly, positive ANA 1.320 speckled pattern. Tested since ME.
4. Yes, before ME and worse since ME.
5. Not tried it.

 

[Raindrop]

Did you have IBS before or early on in your symptoms? YES DEFINITELY & STILL DO!

Do you have sinus problems? HUGELY!!! ALWAYS DID....GETTING WORSE

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) UnDIAGNOSED
BUT SUSPECTED

Do you have MCS? YES

If you have tried it, did you get lasting benefit from LDN? (Haven't tried)
**PLEASE BE SURE TO LET US KNOW OF YOUR CONCLUSIONS FROM THIS!! THANKS!

 

[Sidereal]

Did you have IBS before or early on in your symptoms? Yes, IBS-C.

Do you have sinus problems? Yes.

Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) Yes. Tested positive for ANA (1:640) and lupus anticoagulant.

Do you have MCS? Yes.

If you have tried it, did you get lasting benefit from LDN? Haven't tried it.

 

[rosie26]

Yes
Yes
Don't know
Yes
Haven't tried