How to rule out an autoimmune process ?

Neunistiva

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i was trying to explain that this is an autoimmune disease as much as any disease labelled "autoimmune" is autoimmune disease
Not really.

There is more and more evidence emerging that there is an immune component to ME/CFS. Doesn't mean it's an autoimmune disease. Doesn't mean it isn't either. I wouldn't be surprised if one day it turns out to be autoimmune.

But there is no evidence yet.

Dr. Ron Davis and Dr. Mark Davis just got $3.9 million from NIH to see "whether [ME/CFS] basis is infectious, autoimmune, or both". We are only just starting.
 

Daffodil

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Not really.

There is more and more evidence emerging that there is an immune component to ME/CFS. Doesn't mean it's an autoimmune disease. Doesn't mean it isn't either. I wouldn't be surprised if one day it turns out to be autoimmune.

But there is no evidence yet.

Dr. Ron Davis and Dr. Mark Davis just got $3.9 million from NIH to see "whether [ME/CFS] basis is infectious, autoimmune, or both". We are only just starting.
wow that is great! i think all autoimmunity has pathogens at its core....but then everything probably does
 

Gingergrrl

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i was trying to explain that this is an autoimmune disease as much as any disease labelled "autoimmune" is autoimmune disease
I have to respectfully disagree and I don't think anyone knows yet if ME/CFS is an autoimmune disease. Versus other autoimmune diseases are proven at this point in time beyond dispute: Hashimoto's Disease, Sjogrens, Lupus, Myasthenia Gravis, LEMS, etc. I could also make a solid case for Autoimmune POTS. But not yet for ME/CFS in my opinion.
 

Daffodil

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I have to respectfully disagree and I don't think anyone knows yet if ME/CFS is an autoimmune disease. Versus other autoimmune diseases are proven at this point in time beyond dispute: Hashimoto's Disease, Sjogrens, Lupus, Myasthenia Gravis, LEMS, etc. I could also make a solid case for Autoimmune POTS. But not yet for ME/CFS in my opinion.
but how are those autoimmune? is it because of positive ANA?
 

Learner1

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Autoimmunity is the body attacking itself by creating antibodies. There are many, many kinds of antibodies, so just because you haven't tested positive for one doesn't mean you don't have one. Attached is a list of antibody tests people on this site have been tested for, and which many of us have.

From what I understand, in the US, about 70% of IVIG is prescribed for autoimmunity, not immunodeficiency, but some of us have both.

There was an interesting article recently in the Economist about IVIG. Apparently, the US is the only country where donors can be paid, which results in a larger supply relative to the populstion, resuting in more to go around.

https://www.economist.com/international/2018/05/10/americas-booming-blood-plasma-industry

Many of us with ME/CFS have autoimmune comorbidities. This video was posted a couple weeks ago on Mark Davis and his investigation into ME/CFS as an autoimmune disease.


There are other researchers looking at this, too.
 

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From what I understand, in the US, about 70% of IVIG is prescribed for autoimmunity, not immunodeficiency, but some of us have both.

There was an interesting article recently in the Economist about IVIG. Apparently, the US is the only country where donors can be paid, which results in a larger supply relative to the populstion, resuting in more to go around.
While I know the health insurance system in the US leaves a lot to be desired, if you’re lucky enough to have decent insurance (or if you had lots of money), it seems easier to get access to treatmemts like IVIG and PP. In Australia, the supplies are pretty much only available to people with CVID and primary immune deficiencies and it’s managed tightly by the government so you can’t pay out of pocket for it. We’d probably benefit from the US system, so there was more to go around.
 

Learner1

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I have spent US$250.000 out of pocket for my medical treatment. The US system is costly, and many excellent evidenced based treatments are not covered by insurance, and even for those that are, doctors and patients spend countless hours to get things paid for.

In any health system, except for cancer, doctors and insurance companies are wotking from 20 year old information that they portray as state of the art.

Unless we learn to advocate better, it will be difficult to get well. IVIG can be a game changer for many people.
 

kangaSue

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In Australia, the supplies are pretty much only available to people with CVID and primary immune deficiencies and it’s managed tightly by the government so you can’t pay out of pocket for it.
Items 5, 6 and 7 in this paper from the National Blood Authority lists the approved uses for IVIG in Oz;
 

Learner1

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This is a presentation given last year at the Immunodeficiency Foundation conference discussing autoimmune disease combined with immunodeficiency by Troy Torgerson at University of Washington. Hes a good speaker, explains the immune systen well and discusses how IVIG and other treatments can be applies to immunodeficiency.

 

Daffodil

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@Thinktank wow interesting. May I ask how long ago this was? As far as I know, he has thought this disease is autoimmune for a long time...BUT he might have meant that autoimmune diseases are infection-driven and that there really is no "autoimmunity" or something....who knows? He is a mysterious genius, that one lol
 

Thinktank

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@Thinktank wow interesting. May I ask how long ago this was? As far as I know, he has thought this disease is autoimmune for a long time...BUT he might have meant that autoimmune diseases are infection-driven and that there really is no "autoimmunity" or something....who knows? He is a mysterious genius, that one lol
2 years ago or so?
A genius? A genius doesn't change theory and treatment approach every few years, and each time claiming to have found the cause of CFS/ME.
After years of treatment and damaged health i can only say he's a quack.
 

Learner1

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On the bright side, it doesn't specifically exclude ME/CFS as my insurance company does...

However, it looks like they're behind the curve with not enough supply so they're rationing it. It also doesnt seem to take into account the many types of autoimmunity many of us are uncovering.

In general, it looks like they're recommending .4g/kg every 4 weeks. I started at .75g/kg every 3 weeks and am now getting the same dose every 2 weeks, which would be the equivalent of 1.5g/kg every 4 weeks.

Two of my doctors sent me the attached case study that is very similar to my situation. Again, the dosing is much higher for the autoimmunity. Some US patients are getting 2g/kg every 3 weeks.
 

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On the bright side, it doesn't specifically exclude ME/CFS as my insurance company does...
No, it’s definitely excluded. ME is listed under ‘conditions not supported’.

Two of my doctors sent me the attached case study that is very similar to my situation. Again, the dosing is much higher for the autoimmunity. Some US patients are getting 2g/kg every 3 weeks.
This case study is the closest I’ve come to finding studies/ examples of my health picture and symptoms. I’ve seen you share it before, and now have it printed to show my doctor next visit.!
 

Learner1

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Great! The doctors who shared the document and the slides with me aren't the one who actually prescribed my IVIG. But they both said "This describes so much of you, I had to share it with you."

The key, obviously, to getting it prescribed is to have the prescribing doctor match you up with ICD10 codes that are supported. I originally qualified with CVID, but we are really trying to blast my autoimmune MCAS and POTS with it now, which is why the dose was raised.