Blood Tests to Rule Stuff Out - Should I be looking for anything?

[RyeRyeBread]

My new Rheumatologist ordered a bunch of bloodwork to rule other things out.

These are the tests. Smart science side of PR Forums - Anything here, ME-wise, that might light up like a christmas tree? Or are these pretty much completely unrelated to any ME abnormalities?

Thanks in advance 😊

Note the "CFS, chronic fatigue, unspecified" code my doctors have been using for my health crap smh 😑 CFS is not synonymous with unspecified fatigue smh (also pisses me off they keep using CFS [verbally as well] even though I have used ME only 🙄 but I digress)

Here's the full scoop on my rheumatologist appointment lol

my first rheumatologist

 

[Rebeccare]

Anything here, ME-wise, that might light up like a christmas tree?

I don't think so. I've had all of these tests, and the only one which is ever off is ANA, which is an unspecific measure of autoimmunity. As you said, they're mostly to rule other things out and not to identify what's going on.

These testing recommendations from the ME/CFS Clinician Coalition might be helpful for the future (they also explain what all of these different tests mean): https://drive.google.com/file/d/1Yu79EYxQIwNVER5tErp7LH7KY8pI8S_e/view

Note the "CFS, chronic fatigue, unspecified" code my doctors have been using for my health crap smh 😑 CFS is not synonymous with unspecified fatigue smh (also pisses me off they keep using CFS [verbally as well] even though I have used ME only 🙄 but I digress)

Starting in October there's going to be an update to the ICD-10 in the US, and the code 93.32 will stand for ME/CFS, which can solve the problem that most of us have the diagnosis of 'chronic fatigue, unsepcified' instead. Don't ask why this has been the situation--there's no logical answer! Although the update doesn't solve the problem of eliminating CFS from the vocabulary, it's a huge step in the right direction--you can read more here: https://www.massmecfs.org/68-news/hot-topics/816-g93-32-remember-this-code

 

[CSMLSM]

My new Rheumatologist ordered a bunch of bloodwork to rule other things out.

View attachment 48640
These are the tests. Smart science side of PR Forums - Anything here, ME-wise, that might light up like a christmas tree? Or are these pretty much completely unrelated to any ME abnormalities?

Thanks in advance 😊

Note the "CFS, chronic fatigue, unspecified" code my doctors have been using for my health crap smh 😑 CFS is not synonymous with unspecified fatigue smh (also pisses me off they keep using CFS [verbally as well] even though I have used ME only 🙄 but I digress)

Here's the full scoop on my rheumatologist appointment lol

All quite standard but useful in some situations. I live in the UK and would be happy and grateful for the vitamin B12, folate and vitamin D test, good to know for sure with this condition. It has been sometime since I see a GP about anything, useless F#&£ER!

 

[GreenEdge]

(also pisses me off they keep using CFS [verbally as well] even though I have used ME only 🙄 but I digress)

Isn't ME and CFS the same condition?
I think ME is used in the UK and CFS is used everywhere else. The UK recognized the condition long before other countries. The diagnostic criteria might have been slightly different but it's the same condition, hence why the combined acronym ME/CFS is becoming more common.

 

[CSMLSM]

Isn't ME and CFS the same condition?
I think ME is used in the UK and CFS is used everywhere else. The UK recognized the condition long before other countries. The diagnostic criteria might have been slightly different but it's the same condition, hence why the combined acronym ME/CFS is becoming more common.

ME/CFS got correctly recognised by UK about a year ago and in guidance only really when GET was finally recognised as damaging. Going to the doctor before would mean being labelled as difficult and not undergoing treatments and parents of children have been prosecuted for refusing to let doctors impose GET treatment on there children. Many have been made much worse by this and likely took their own lives because the decline and severity. The UK does not treat ME/CFS well at all. In the minds of most doctors it is still a mental health issue. Its abusive treatment by so called health carers.

I personally see CFS as less immune system related and HPA axis dysfunction (dysautonomia) dominant and ME/CFS as being driven more by immune system.

I have had ME/CFS a long time and strated out with CFS and then became more Fibromyalgia and then more ME/CFS over the years. Its a spectrum, thats how I see it anyway. I have been experimenting for 20years with cannabinoids to control this condition and found the answer I was looking for sometime ago but could not source the right material. This year in February I did and now am almost normal and bouncing off the walls with energy that I have not had most of my life, I am nearly 40 and a male. Always struggled and now am held back by the body atrophy caused by the condition over the last 20 years. I am now lean and have a body like a teenager. All I need to do to get back to work after 20years is build myself up slowly over my predicted 2year timespan. I have been in recovery this time for 2-2.5years and it is a full as can be recovery having to still manage with my treatment everyday. I sleep when I want, get up early and have routine, motivation, joy, time, engagement in life again among many other things now so old to me they are as if they are new experiences.
Unfortunately the cannabis propaganda machine is still affective to this day, I am not believed with people prefering to believe I have never had ME/CFS or something.

 

[Learner1]

I would have quantitative PCR tests for Epstein-Barr, HHV6, HHV7, and tests for chlamydia and mycoplasma pneumoniae. The antibody tests can miss these diagnoses if your immune system isn't working correctly.

Also a lymphocyte subset panel, CD57 test, and gammaglobulins with subclasses.

Antigliadin antibodies, the Cell Trend POTS/ME/CFS test, and thyroid antibodies.

Free T3, reverse T3, and a DUTCH Complete test.

A GI Map test. Followed by Viome 3 months later.

 

[CSMLSM]

I would have quantitative PCR tests for Epstein-Barr, HHV6, HHV7, and tests for chlamydia and mycoplasma pneumoniae. The antibody tests can miss these diagnoses if your immune system isn't working correctly.

Also a lymphocyte subset panel, CD57 test, and gammaglobulins with subclasses.

Antigliadin antibodies, the Cell Trend POTS/ME/CFS test, and thyroid antibodies.

Free T3, reverse T3, and a DUTCH Complete test.

A GI Map test. Followed by Viome 3 months later.

Nice list. If only it was possible for me to get those I would have. Might be a little pointless now unless I stop my treatment for a while, I am so well atm.

 

[YippeeKi YOW !!]

It has been sometime since I see a GP about anything, useless F#&£ER!

Took the words right out of my mouth. Very unsanitary .....

 

[RyeRyeBread]

Isn't ME and CFS the same condition?

There's a lot of debate as to whether they actually are, or whether or not ME/CFS as a whole is just a gathering of many different illnesses... But putting that all aside - I ultimately prefer to use ME instead of CFS because of diagnostic criteria differences and issues I have with the term CFS. The ICC criteria for ME is strict and some people meeting other CFS or ME/CFS criteria may not fit the ICCs. I think that because of this, if ME & CFS turn out to be seperate (two illnesses, or two different types of the same illness, of different severities for example), stricter criteria could help differentiate. That's a theoretical, of course. Aside from that, I also believe that (like with many other chronic illnesses) with the less strict criteria there is a greater potential of people who don't actually have this illness, who may be dealing with something else entirely, being wrongfully diagnosed. So, meeting stricter criteria = lesser chance of it being something else. Stricter criteria = ICC for ME 🤷‍♂️

The term CFS is problematic, in mine and many other's opinions. If I'm not mistaken, the term ME existed prior to CFS - so technically CFS is a nickname, and not a great one. It is highly dismissed by the general public and the medical community, it's mistaken for chronic fatigue all the time (which makes complete sense because it's just that with syndrome tied on the end), and it's absolutely bizzare that we named an illness a symptom-syndrome... Like, we don't call Fibromyalgia "nerve-pain syndrome", or arthritis "joint ow syndrome" smh
It dumbs down the illness to one symptom, doesn't sound medical in the slightest, is highly dismissed and dismissive --- while ME is recognized (not nearly as much as it should be obviously) immediately as medical in nature, sounds like an illness when you say it out loud, and is (again if im not mistaken) older than the term CFS.


So ultimately, yes and no and maybe to being the same. Some people use one, or the other, or both.
I started out using both, then quickly switched to just ME as it's more comfortable to me and makes more sense. 🤷‍♂️☺️

 

[YippeeKi YOW !!]

There's a lot of debate as to whether they actually are, or whether or not ME/CFS as a whole is just a gathering of many different illnesses... But putting that all aside -

Thank you for posting that explanation, @RyeRyeBread . I strongly believe that ME and CFS are two similar, but in the final, full analysis, totally different illnesses, etiologically speaking.

But for the life of me, I couldnt have come up with an explanation as to why I believe that today if you dangled a large check, a free housekeeper, cook and chauffeur for the next five years, and a pick-up truck loaded with primo Belgian dark chocolate in front of me cause, brain.

You and @CSMLSM have tidied that up nicely, and thank you both for those efforts. I really would love to see a law passed banning lumping them together haphazardly, like socks someone found in a clothes drier that don't match, but what the hell, they were free.

And while I'm cranking the dream machine, Wessely is banished to particularly unpleasant and barren desert island for life, GET, CBT, and all their ilk are entombed somewhere in the Himalayas, and there's more but .... brain.

 

[SWAlexander]

Suggesting tests for:
VWF (Von Willebrand factor),
APL (antiphospholipid),
Enterovirus (polioviruses, Coxsackie A viruses (CA), Coxsackie B viruses (CB), and echoviruses,)

 

[CSMLSM]

You and @CSMLSM have tidied that up nicely, and thank you both for those efforts.

I am glad to help, thank you.