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

Messages
97
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

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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

Senior Member
Messages
717
Location
Jerusalem, Israel
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

Senior Member
Messages
188
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.
 

Mij

Messages
2,353
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

Messages
2,353
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

Senior Member
Messages
284
Location
outside of NYC
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

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
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

Senior Member
Messages
843
Location
Surrey
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

Revolting Peasant
Messages
1,904
Location
Scotland
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

Senior Member
Messages
2,262
Location
UK
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.
 
Messages
1,082
Location
UK
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
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
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
 
Last edited by a moderator:

daisybell

Senior Member
Messages
1,613
Location
New Zealand
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

Making the most of it
Messages
1,928
Location
Australia
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

Senior Member
Messages
129
Location
USA
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

Senior Member
Messages
4,856
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.