Definitions can drive me batty

Not dead yet!

Well-Known Member
First I want to apologize for not having the energy to respond to the responses I've noticed I have on this site. It's so nice to know that people are communicating to me. This illness can be so lonely. I'm just sorry I don't have the energy to respond in kind right now.

I think my mind is always working on why why why... and something happened today that showed me that why is partly because of the way we define things. Take a look at this article:

Multiple Sclerosis and Chronic Autoimmune Encephalomyelitis
American Journal of Pathology, Vol. 157, No. 1, July 2000
Copyright © American Society for Investigative Pathology

So it's old. Around 2000 a friend of mine was diagnosed with MS and whenever I go on another hunting journey through pubmed or even on alternative health sites (I don't care what works as long as it does), I'm constantly tripping over MS, or some other illness of the nerves that is somehow described as autoimmune or just immune dysfunction.

I think a big part of the problem here is that we allow such vague definitions to exist. It confuses everyone and gives opportunities for patients to be dismissed because they don't have one or two "classic" symptoms. This puts patients back on the refuse-pile of "unknown fatigue" for longer periods than necessary. I mean,

FM - relapsing remitting fatigue, pain, brain fog, malaise

MS - ditto plus loss of muscle control

ME/CFS - ditto plus fever (which IOM version 10 has now removed from the symptoms), recent research into mitochondria and cytokines may lead to a gold standard diagnosis but currently no such luck

Post viral fatigue - ditto but if the virus is one of the Herpes family, it has a valid treatment HHV6 has its own foundation for research, HTLV has been validated in Asia and has a treatment (I think, I'm not an expert on it)

OK, so how many more are there? Why aren't we looking at these as one illness with a few optional outcomes or complications?

I was thinking a lot about viruses in general. Think about this:

1. The Japanese a few hundred years ago came up with what we today call the "Macrobiotic" diet, it has many features, but the one of interest to what I'm thinking right now, is that all food has to be COOKED even veggies.

2. The Raw Paleo movement, there are people purposely eating raw meat today, if you don't believe me, google it. Some of them also "ferment" the meat first. As disgusting as that sounds to me, I have to agree that at one time, before the human invention of fire, we did eat raw meat. And animals eat raw meat in the wild.

3. Two major religions ban the eating of pork. One explanation for that is trichinosis, but another could be the use of night soil as a food for pigs in poor countries.

4. Mad cow disease, recent new pig viruses that affect humans, and illnesses of wild hunted deer in Colorado (are these both viral?), long ago we'd have eaten that raw.

5. Slaughterhouses are the horrors they are today partly because of the Jewish prohibition of letting meat touch blood. (See? I was listening when I was a vegan.) Further, brining is a standard procedure in Jewish cooking (and many nearby cultures like mine, I always brine meat at least briefly before cooking it). Brine water is always a bit pink with the blood it pulls out.

If all this is true, and there may be other examples, then humans have long known of the dangers of picking up illnesses from food and/or the blood of animals. I can't explain the new raw paleo's but I can theorize that it is an immune retraining technique (toughen you up by giving your immune system real targets). It also may explain why there is such a stigma. If some people are more susceptible to the illnesses, then that's something wrong "with them" not with the food.

This also explains why vaccines are possibly so dangerous if they are badly purified and may contain animal pathogens. In that case the viruses/etc. don't go through the gut, but directly into the tissues and blood. Nature never imagined humans would invent needles and bypass the gut, but it did provide us with a healing mechanism if our skin was broken. We can assume pathogens had access to tissues via broken skin - before there were needles.

So to my mind this brings us full circle. It's back to, strengthen the immune system. Antivirals are only good if the body can be healed and expected to respond properly to the next viral or pathogenic attack.

Also many of these diseases that are similar are called "rare diseases" but if the above is true, they are not rare at all but totally ordinary and they recently took a turn for the worse with higher numbers of people affected than before. The reason for the increase is cannot be sought until this insight is made (that we're dividing but not conquering this illness). Here is another one:

Scholars in Denmark have been looking into immunoglobulin therapy for that (I've lost track of the article, sorry about that, it was recent though, 2017). Personally I find it difficult to accept that the CIDP illness is "totally different" from MS. And new research into a possible viral cause of MS seems to back me up a bit.

Sorry I've been so tired lately, I think partly my mind is working on this new holistic view of my illness, and it's draining me. I did want to share this insight though. I promise I will read the responses thought it may be a few days before I can respond. I hope you're all well and getting better.

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