Why Chronic Fatigue Syndrome, fibromylagia, cancer & more.

This blog is about the on-going challenge I'm having to finish the book about CFS (myalgic encephalomyelitis/UK) and several secondary diseases which can present as a result, i.e., fibromyalgia, depression, IBD, cancer (especially colon cancer), schizophrenia and Parkinson's, etc.
If you have followed the recent news that an American lab determined that the retrovirus, XMRV, was found in over 90% of people with CFS, although British and German labs have not been able to find this virus in CFS patients' blood, then you might assume that a cure is in sight. Vaccination is being talked about; the use of AZT (the same drug as HIV/AIDS patients take) is also being talked about, even though AZT can make a person who does not have AIDS very sick indeed. I tried to post my scepticism about the XMRV virus several times on the recent New York Times blog about the virus and CFS: I just mentioned that it is a well-known fact amongst CFS researchers that people with CFS are extremely prone to having antibodies to whatever virus is prevalent without actually ever coming down with a viral disease, and my comments got posted only once and were then quickly removed within a few days. So I doubt my that stating the non-viral cause is going to go down well either.

Saturday, September 25, 2010

Multiple sclerosis and a little-known sheep disease

J.K.Rowling of the Harry Potter books fame recently announced that she was funding a research center in Scotland primarily for multiple sclerosis (which her mother died of), but also for other degenerative neurological
diseases.
MS is a disease of northern climes: where you were born and lived for the first fifteen years of your life determines your susceptibility to MS.
Remember Dr. Sigurdsson, the medical examiner for Iceland during WWII, who came up with the concept of slow viruses, i.e., viral (and more recently, prion, diseases that take a long time to develop into a full-blown disease, e.g., AIDS, mad cow disease - BSE).
Iceland was, at the time, suffering financially from what appeared to be two new sheep diseases: one that caused pneumonia (maedi - coughing), and another (visna - wasting) which caused wasting, tremors, blindness, paralysis of the hind limbs, and ultimately, death. Dr. S. determined that the two diseases were actually caused by the same slow lentivirus (which has been found to be related to the modern slow virus disease, AIDS).
Maedi-Visna (MV) was introduced into Iceland during the 1930's by the importation of diseased sheep from Germany. Dr. S. also remarked how similar MV was to MS - similar brain and neurological damage and symptoms.
The first documented human case of MS (a young woman) appeared in Holland during the mid-1700's, which makes it obvious that MV has been around for quite some time in some Dutch/German flocks of sheep. Don't forget that people and their animals did not move around much back then. What may have began and remained for years as a small, isolated-to-one-or-two-small valleys disease, started to become a world-wide disease with the large increase of movement of animals to different countries.
Yet when I googled MV disease and came up with mainly British articles, I got the somewhat startling info that MV had 1st presented itself in two widely different places: in South Africa and Montana in the US some eighty years ago. Using simple arithmetic I worked out that these two outbreaks also began in the 1930's, just like Iceland's. And, at least in South Africa, there is a direct link to Holland (and probably Germany), as the country was settled by Dutch settlers, who, obviously, would have brought, or bought, sheep from their country with them. Now there aren't any sheep indigenous to Montana and so I am assuming that German or Dutch settlers also brought or bought sheep from their homeland too, thus introducing MV disease into the US.
The British are concerned about this disease since it is new to the UK,and we do have a lot of sheep in Wales and Scotland, where this is a major source of income in wet, difficult mountainous areas; there were only 3 recorded cases two years ago, but there were 11 cases last year, and so companies are trying to find a vaccine for this retroviral disease (which given how difficult it has been to try and find a vaccine for the related retroviral disease, AIDS, may well prove to be impossible.
But if MS is the human equivalent to MV, why aren't researchers looking for a vaccine for MS too?

Wednesday, September 15, 2010

CFS meetings - a waste of time

Apparently half of my blog got cut off. Well, I started going to CFS/CFIDS meetings when I first came back to the US. They took place at a meeting-room at a local hospital. After several meetings I wrote and printed up a synopsis of what causes and happens when you ingest carrageenan and ultimately get chronic fatigue syndrome. Unfortunately the concept was too difficult for the person in charge of the local chapter to understand (part of the problem is tha CFS can make even reading something very difficult; and understanding new, scientific material almost impossible. I'll never forget her look of unbelief; of incomprehension. I was not allowed to hand the leaflets out and most definitely not allowed to even speak for even five minutes at the end of a meeting. The woman had no qualifications of any kind to run such a group except the willingness to start a local chapter. It's a phenomenon I've come across before: and contrary to that old saw:- In the land of the blind, a person with one eye is king - in my experience such a person is more likely to be shunted aside and ignored. In a more uncivilized society, stoned!

CFS meetings cont'd

I got cut off the last time I wrote and so continuing the problem I had with CFIDS meetings. I remember one young man who came quite often. We often had to help him walk out; he was tremendously dizzy; his pupils would enlarge and then contract rapidly. I felt really bad that I had no chance to help him; to say do not take food with carrageenan in it.
I decided that I had had enough; that it was wasting my time and energy when the woman in charge told me as though she were imparting something of tremendous import, that chronic fatigue syndrome was "a gift from God", and I thought then that with a friend like that one didn't need enemies - that she wasn't interested in a rational basis for CFS. She was invested in keeping the status quo no matter the cost to anyone else.

Friday, September 10, 2010

Celiac disease and carrageenan

Please excuse the mistake in paragraph 6 of the last blog: "glutamate" should be glutamine. Another crucial thing that you can do to reduce symptoms is to walk for a minimum of 20 minutes every 2/3 days. This tightens loose junctions in the intestinal wall.
Which reminds me of the hidden gluten and one of its main building blocks, glutamine, which i, as a person with celiac disease, i.e., cannot eat wheat, have to avoid.
It was, as far as I can remember without checking, during the mid-1990's that I was diagnosed with celiac disease (which affects a surprisingly high number of people - an estimated 1 in 133).
At first when I went on the restricted wheat-free diet I fet wonderful - better than I had done in years, but over a period of a few years I started to feel sick again. I could barely move. I tried reducing my diet to a very few foods but still kept on drinking buttermilk.
It wasn't until I went back to England and my symptoms immediately regressed - the improvement began during my stopover at Chicago's O'Hare airport - regression of nausea, fatigue, loose bowels, headache - that I gradually realised that drinking buttermilk was the problem - and the one additive that all modern buttermilk contains is the additive, carrageenan.
When I returned to the U.S. I joined a celiac group that met once a month at a local hospital. Many people at those meetings complained that they couldn't get their symptoms under control, just like I once also thought; that they were somehow eating or drinking gluten and if they could only find and eliminate that hidden gluten then their symptoms would disappear (it can be more dangerous than you might think: one woman had just returned from a stay in hospital because of this).
I decided to speak out at the next meeting: that their problem was likely not hidden gluten (or glutamine) but that of ingesting carrageenan which damages intestines, looses junctions between cell walls, and allows large undigested food particles into the body. No-one listened; no-one made any comments showing their interest; the only response I got was the one man who saw his opportunity to declaim mercury as the cause of celiac disease. I never went back.

Thursday, September 2, 2010

Overactive Bladder is the result of intestinal damage

Recently at work I met someon who had to go to the bathroom a lot. Since I suffer from the same issue, although it's under control, I thought I'd discuss this here.
You could ask what is this to do with CFS (M.E)? Well, Overactive Bladder (OB) is a direct result of intestinal damage, therefore, carrageenan damage. And instead of taking Pfizer's Detrol LA, or Toviaz, or Vesinex, which makes a very pretty profit for companies which know all about the kind of damage that carrageenan causes, you can take control of OB into your own hands for a much cheaper price.
Initially, for a very quick resolution of symptoms, take Mucinex (sold to reduce the amount of mucus in the lungs); cheaper is a brand such as Krogers Mucus Relief which contains the identical product, guafenesin, at about $6 for 30 tablets.
Drink 1 to 2 glasses of milk each day. If lactose intolerant, there is lactose-free milk such as Lactaid (and there are also cheaper equivalents). Milk solids contain 10% of a very short carbon acid that is essential for the health of intestinal cells: butyric acid - found usually in the form of a salt and then known as butyrate.
After a couple of days of drinking milk, you can then reduce or stop the Mucinex - only using it as a backup when symptoms show up again.
One more thing you can do is to eat nuts (but definitely not almonds - too much glutamate). A couple of walnuts now and then, preferably ground up and cooked as in a banana and walnut teabread or coffeecake, are good for your intestines. Too many and every day is not so good, probably because they contain some glutamate which can create gluten in your intestines, which negates the good they do.
These simple steps will control your Overactive Bladder, getting rid of that intensely irritating urge to empty your bladder every half-hour or so. You will still get up a couple of times in the middle of the night but it's nothing compared with how it is with no treatment.