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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What disorder do we REALLY have?

Gingergrrl

Senior Member
Messages
16,171
I lean toward the theory of there being multiple diseases lumped in the CFS/ME category.

Likewise.

The breakthrough that explained why pernicious anemia patients couldn't absorb B12 came because a doctor experimented to prove that intrinsic factor exists. His experiment involved eating liver, throwing it back up, and feeding that to his patients (who did not know what they were getting). The patients were able to absorb the B12 from the regurgitated liver because the doctor's intrinsic factor was part of the mix. The experiment would be considered unethical today, but it was considered a breakthrough at the time.

Wow, I had never heard that before and it is absolutely fascinating! I was recently tested for pernicious anemia (b/c for several months I had both anemia and very low B-12) but my results were negative.
 

Galixie

Senior Member
Messages
219
Wow, I had never heard that before and it is absolutely fascinating! I was recently tested for pernicious anemia (b/c for several months I had both anemia and very low B-12) but my results were negative.

Not to get too off topic, but there is no really good test for pernicious anemia. The Schilling test is pretty universally unavailable now, but it could reliably detect whether there was a problem with absorption. A positive was not specific to pernicious anemia, but treatment for the B12 deficiency would have been the same regardless. The parietal cell antibody test is another test that is not specific to PA, but it does point to absorption problems, so treatment for the B12 deficiency would still be needed. The intrinsic factor antibody test is only accurate about half the time among patients who are already known to have PA, so testing negative for intrinsic factor antibodies doesn't rule out having PA. It is the only test that is specific for PA though, and a positive result is considered a definitive diagnosis.

Currently the recommendation is to test MMA and homocysteine, because absorption problems lead to elevated homocysteine levels. These are sort of downstream tests though. You have to have enough of a deficiency in your system for these levels to have become affected before the tests will be useful.

Basically, there are a lot of ways for the body to not correctly absorb B12. If you can't absorb it, you need to be treated for the deficiency no matter what the cause is.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
The doctor who felt other diseases had PEM was mistaking what it is we have. Friends with MS, RA and cerebral palsy become exhausted after exertion because it takes so much out of them but CPET test shows this is not PEM as we know it.

This series of experiments has shown that we do not recover from exertion the way everyone else does - all other disease have not been tested of course, but the Workwell clinic tested MS and problems with the heart and lungs are tested routinely by a single test - and the tests also show that our aerobic respiration system is broken. That is basic to ME in the way lack of insulin is basic to diabetes. The details of exactly HOW diabetes happens was unknown just a few years ago (they may have been new discoveries I have not heard about) but then no one had ever managed to isolate a cell from the pancreas that was broken.

So not knowing HOW our aerobic system is broken is not as important as knowing that it is happening. That result was the most important of the last 50 years and in any other disease would have made headlines and had money poured at it. Especially important is it confirms what patients and doctors have been claiming for years.

I believe all the other problems are a result of this lack of ATP - every system needs energy to work and if it is not available things will go wrong. In the 80s they were talking about how the systems most affected were those with the highest energy requirements.
 

joejack102

Senior Member
Messages
133
What do you suggest we do about? I've been to demos, attended meetings, lobbied everyone I can think of, raised funds and much more for over 30 years.

1) Finding the TRUE cause. There are many "theories" that aren't backed by evidence, such as that our "nervous system is out of whack." We need the true root cause that can be backed up by a blood test.
2) Treating for the ROOT cause, NOT the symptoms. Everything mentioned in all the treatments I've seen regarding this condition involves treating symptoms, not the actual underlying cause.
3) Raising international awareness. Every single local doctor should be able to test for this disorder in bloodwork, and there should be prescriptions or treatments that address the underlying problem.

Thousands more are affected by whatever this is, and most don't even know they have it. Thousands of lives are being lost due to poor health probably caused by this. My diet, metabolism, and overall health has gone down the drain in recent years, and this condition has been the root cause of my lack of health, mentally and physically.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
Well, it's kind of hard to treat the root cause when no one knows what it is. Unless someone stumbles upon something that actually treated the root cause, we have to wait for someone to find the cause.
 

Gingergrrl

Senior Member
Messages
16,171
The parietal cell antibody test is another test that is not specific to PA, but it does point to absorption problems, so treatment for the B12 deficiency would still be needed. The intrinsic factor antibody test is only accurate about half the time among patients who are already known to have PA, so testing negative for intrinsic factor antibodies doesn't rule out having PA. It is the only test that is specific for PA though, and a positive result is considered a definitive diagnosis. Currently the recommendation is to test MMA and homocysteine, because absorption problems lead to elevated homocysteine levels. These are sort of downstream tests though. You have to have enough of a deficiency in your system for these levels to have become affected before the tests will be useful.

Thanks for the additional info @Galixie. I was tested for parietal cell and intrinsic factor autoantibodies and was negative on both. My MMA was normal but my homocysteine was extremely high for months (prior to finding a B-12/Folinic Acid supplement that I was able to tolerate and now take daily). My B-12 and Folate are now in the normal ranges and no longer anemic so I think PA is ruled out.

Basically, there are a lot of ways for the body to not correctly absorb B12. If you can't absorb it, you need to be treated for the deficiency no matter what the cause is.

Thanks and that is what I assumed (but was not sure if someone did have PA, if there was an additional treatment).
 

joejack102

Senior Member
Messages
133
Well, it's kind of hard to treat the root cause when no one knows what it is. Unless someone stumbles upon something that actually treated the root cause, we have to wait for someone to find the cause.

Nobody in the medical field and research field seems to be looking. We've got to do something about that.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
For over a decade, I've been "labeled" as POTS Syndrome, Mitral Valve Prolapse Syndrome, Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, Myalgic Encephalopathy, etc. The list goes on and on and on.......

What is the real underlying cause? I believe every single person on this entire website has the exact same medical condition (root cause), and we are being ignored by the mainstream medical, scientific, and pharmaceutical community.

Do we all have Mast Cell Activation Disorder (MCAD or MCAS) brought on by Lyme Disease?
The inflammatory process of GI dysmotility can cause increased mast cell activity without it actually being due to MCAS/MCAD.

Having POTS, other dysautonomia and a positive ANA would warrant further testing for other antibodies known to be involved in autoimmune conditions, something like Mayo's PAVAL panel to cover all the bases or just their DYS1 and an ENA panel for the connective tissue disorders.
 

Galixie

Senior Member
Messages
219
A negative intrinsic factor a/b test but positive parietal cell a/b test can indicate Autoimmune Atrophic Gastritis as a cause of Pernicious Anemia though.

That is true, but a positive parietal cell antibody test can happen for other reasons as well. An upper endoscopy can confirm gastric atrophy and further point to PA. Getting a PA diagnosis can be really difficult because none of the tests are both reliable and specific enough to make diagnosis easy. Add that to the fact that most doctors probably heard about PA once during their first year of med school and never again afterwards, and you have a similar problem as with CFS/ME where a patient shows up with a bunch of seemingly unrelated symptoms and the doctor just throws their hands up and says it's all in your head. (Of course the scary part of that scenario with PA is that untreated B12 deficiency can cause a form of schizophrenia known as megaloblast madness. So that means it sort of is in the patient's head...)

I really hope that all of the immune system research that's been happening lately (mostly cancer research) will inadvertently uncover a cure for autoimmune diseases. I feel like that will get us closer to the mark of finding the root cause and fixing/curing the ME/CFS riddle. (And PA too.)
 

joejack102

Senior Member
Messages
133
I really hope that all of the immune system research that's been happening lately (mostly cancer research) will inadvertently uncover a cure for autoimmune diseases. I feel like that will get us closer to the mark of finding the root cause and fixing/curing the ME/CFS riddle. (And PA too.)

I feel like we need to insist & demand aggressively that this be more specifically researched. We need national awareness and a mega-powerful national foundation.

I bet thousands more will come forward with the increased awareness. They will say "I always knew something was wrong with me, but I never could get a diagnosis."