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What tests should be done on every ME/CFS patient?

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
I spent years trying to figure out what i had before getting the diagnosis, so i'm sure i've covered a lot of it but is there anything thats common/uncommon or similar diseases to rule out or useful tests that every ME/CFS patient should get done to understand or tailor treatments for this condition that i should ask for?
Also what should i be trying to see if it has any effect (if i have the means in the future), i have tried many things but have seen others mentioned across the forum.
 
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*GG*

senior member
Messages
6,389
Location
Concord, NH
I spent years trying to figure out what i had before getting the diagnosis, so i'm sure i've covered a lot of it but is there anything thats common/uncommon or similar diseases to rule out or useful tests that every ME/CFS patient should get done to understand or tailor treatments for this condition that i should ask for?

ME/CFS is a diagnosis by EXCLUSION, so whatever your symptoms may be, your Dr should have ruled out all things that might cause them. If nothing significant shows up, then you likely me ME/CFS.

GG
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
ME/CFS is a diagnosis by EXCLUSION, so whatever your symptoms may be, your Dr should have ruled out all things that might cause them. If nothing significant shows up, then you likely me ME/CFS.

GG
I already know i have it ( :cry: ), but i see posts mention methylation, genetic testing results, antibody tests, and so forth.
I guess i should also append my post to what should i try (that i have not already, people have mentioned things like magnesium, B vitamins, Q10, etc)
 
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charles shepherd

Senior Member
Messages
2,239
If you are in the UK the ME Association list of recommended baseline investigations is covered in our information on Early and Accurate Diagnosis of ME/CFS.

Free MEA website download here:

http://www.meassociation.org.uk/201...nals-that-could-improve-prognosis-9-may-2016/

Second and third tier investigations, which will depend on the clinical assessment and the differential diagnosis, are covered in considerable detail in the Investigation section of the MEA purple book (pages 52 - 57)

The MEA purple book is sent out with a covering explanatory letter from myself

If you want a copy sending to your GP or hospital specialist, please send the name of the doctor and the surgery or hospital address to Gill or Helen at the MEA office

MEA purple book: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/



Dr Charles Shepherd
Hon Medical Adviser,
ME Association
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
If you are in the UK the ME Association list of recommended baseline investigations is covered in our information on Early and Accurate Diagnosis of ME/CFS.

Free MEA website download here:

http://www.meassociation.org.uk/201...nals-that-could-improve-prognosis-9-may-2016/

Second and third tier investigations, which will depend on the clinical assessment and the differential diagnosis, are covered in considerable detail in the Investigation section of the MEA purple book (pages 52 - 57)

The MEA purple book is sent out with a covering explanatory letter from myself

If you want a copy sending to your GP or hospital specialist, please send the name of the doctor and the surgery or hospital address to Gill or Helen at the MEA office

MEA purple book: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/



Dr Charles Shepherd
Hon Medical Adviser,
ME Association
Interesting, thanks
I'm located in Canada and can't afford the book unfortunately :(
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
I spent years trying to figure out what i had before getting the diagnosis, so i'm sure i've covered a lot of it but is there anything thats common/uncommon or similar diseases to rule out or useful tests that every ME/CFS patient should get done to understand or tailor treatments for this condition that i should ask for?
Also what should i be trying to see if it has any effect (if i have the means in the future), i have tried many things but have seen others mentioned across the forum.
Alvin, for those of us in Canada, beyond the basic testing to rule out other possible conditions, we don't have access to a lot of the tests that the Americans can get done. At least that is what I am being told. :(
 

Dechi

Senior Member
Messages
1,454
According to my specialist, Dr Hyde, you only need 2 tests to confirm ME.

1- a spect scan to confirm hypoperfusion to the brain, as every ME patient has it and if they don't then it's not ME
2- a gastric biopsie to confirm the presence of enterovirus or other infectious agent

That's it. Everything else is just to make sure there isn't other underlying issues that might be treated with medication (ex : cardiac testing, table tilt test, ect).
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
Alvin, for those of us in Canada, beyond the basic testing to rule out other possible conditions, we don't have access to a lot of the tests that the Americans can get done. At least that is what I am being told. :(
Perhaps i can't get them done but what tests are you referring to?

If you contact Gill Briody at MEA Head Office (email addy on MEA website) and say that we have been discussing this on PR, and Dr CS has cleared a free copy, she will post you a free copy next week…..

Regards

CS
Cool, i will do this, thanks :)
Is it better if i e-mail Gill or if i pass you my details to send along?

According to my specialist, Dr Hyde, you only need 2 tests to confirm ME.

1- a spect scan to confirm hypoperfusion to the brain, as every ME patient has it and if they don't then it's not ME
2- a gastric biopsie to confirm the presence of enterovirus or other infectious agent

That's it. Everything else is just to make sure there isn't other underlying issues that might be treated with medication (ex : cardiac testing, table tilt test, ect).
I've had an MRI that shows multiple white matter lesions, but if the spect and biopsy were definitive then would they not be a recognized biomarker and ME/CFS no longer a diagnosis of exclusion?
 
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*GG*

senior member
Messages
6,389
Location
Concord, NH
I already know i have it ( :cry: ), but i see posts mention methylation, genetic testing results, antibody tests, and so forth.
I guess i should also append my post to what should i try (that i have not already, people have mentioned things like magnesium, B vitamins, Q10, etc)

How about LDN (low dose naltrexone), not sure how easy that is to access in Canada though, not the easiest thing to get a Dr to prescribe. But you can buy it online and dilute yourself. I did that for a spell, because I ran out and it is much cheaper to take that way, even if insurance covered it.

Gg
 

Dechi

Senior Member
Messages
1,454
Perhaps i can't get them done but what tests are you referring to?


Cool, i will do this, thanks :)
Is it better if i e-mail Gill or if i pass you my details to send along?


I've had an MRI that shows multiple white matter lesions, but if the spect and biopsy were definitive then would they not be a recognized biomarker and ME/CFS no longer a diagnosis of exclusion?

@Alvin2 Well, they are for Dr Hyde. He has written about it too. He is sending his work to doctors and hoping to have an influence. He does conferences around the world. But he is not a young man anymore (80 y.o) and so he dedicates his 30 years experience with ME to help people. He has diagnosed thousands of ME patients and helped diagnosed an incredible number of other patients caught in the CFS umbrella.

https://lookaside.fbsbx.com/file/Definition of ME - Dr Hyde 2016.pdf?token=AWzeqot0PQ12K2Y_UArvv1dAGEVGhnRc9a904bPprKDsw0E0jm0AudmW5E-tzOVWVsD3C3Hj4r91OFp9AGgVlBi3UQPepYzinfusFTYHIwZzDGkIAnskkmi12P9Jsom_9JIk0APVFHiF06ugYw2DesQ8

Does this link work ?
 
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Alvin2

The good news is patients don't die the bad news..
Messages
2,997
The link isn't working :(

Tilt table test
Citokine profile
Nk cell number and activity
Lymphocyte subset.
Metabolites ( I never done this one so cannot recommend any)
Why the tilt table test?

I will read it when i can, thanks
 

Seven7

Seven
Messages
3,444
Location
USA
Why the tilt table test?
In my personal opinion, when you have CFS eventually we all develop at some point of the desease some kind of disautonomia, PoTs looking to be more common but I think the moment the patient feels it cannot be upright without feeling horrible is time to test for OI.