GcMAF update/VDR/Voices from the Shadows/New Name

I have been on GcMAF for 5 months now, and I'm sorry to report I've had no improvement.

I am pretty much the same as I was in May: mostly housebound. I can't shop. I can't cook. I can't clean out my closet.

I can't seem to go out more than once a week, if that. When I tried last week I had a major crash, which I am still experiencing, or maybe just starting to coming out of. Two days ago I was too tired to get out of bed or to talk the entire day. Jim came over and sat on the bed and I just tapped his hand with my finger to let him know I could hear him. Most of the time it is not that bad, but it happens. Yesterday I could talk a little more. Today I'm sitting up on the couch.

I took my last dose of GcMAF this morning. I've been taking it sublingually every 5-7 days. I ordered it from BGLI in The Netherlands. When they were no longer shipping to the US my parents flew to Amsterdam and got some for me because I wanted to stick with it at least 5 months. I got an email from them today saying they have resumed shipping to the US. But I don't think I'll be ordering any more.

On the other hand, here is a video I saw today posted by Dr. Enlander. His GcMAF trial, as I understand it, involves weekly injections of GcMAF not from BGLI but from a different source. This is just one patient, not sure of what is overall results are, if anyone does please let me know, but this one patient seems to have made a remarkable, and enviable, recovery.

This video makes me want to take the next flight to New York and see if Dr. Enlander is taking more patients for GcMAF. But I already have travel plans. Next week I'll be back in Asheville for Dr. Cheney's and Dr. Ruggerio's MAF 14 yogurt making clinic.

I'm not exactly looking forward to it. It's a long flight by myself, followed by a long drive. My dad is meeting me at the airport and taking the clinic with me. It's three days long. I don't know how I'm going to manage. My dad can go in my place but I'm the one who is going to have to come back home and teach it to Amy so she can make it for me.

I'd love to go to Florida while I'm back east and visit my best friend. She might be able to make the ten hour drive to Asheville to pick me up. Then I can visit for a few days or a week and fly back to LA. I'd like to check out St. Pete's white sand beaches, go to some restaurants, maybe the Dali museum, but chances are I will not be up for anything but sitting around the apartment.

I'm not expecting much from the yogurt. There's so many blood tests I have to take before I start it. The kits just arrived today, one of the kits. There's more to come. I have a good feeling they won't all be here before I leave. Cheney's office seems to be going through a lot of staff changes and in the meantime I haven't gotten a test result in months. I still don't know whether or not my nagalase has gone down, or the results of my last two calcitriol checks.

And...as I was writing this I just got an email about my VDR type: Bb Ff. It means I should be a good responder. Oh well.

I keep stressing myself out over these longshots. And I guess I haven't had enough yet.

There's a new documentary out called Voices from the Shadows. It's available for streaming on the Mill Valley Film Festival website until October 30th here. I highly recommend it. At first because of the music and the style, I was a worried it was going to be like a super long, maudlin YouTube video. But it's not. It's message is substantial and the stories are so important. It tackles what I think is the most important issue with this disease, the psychiatrists trying to hijack it.

All of the patients interviewed live in the UK. Six years ago, the first time I dropped all my classes midsemester, I had still never heard of CFS or ME. I was sleeping excessively and when I did get up and go to classes I was so tired I couldn't believe it. My only diagnosis was still depression. In an IM conversation, a friend in Europe said, "You've got to go to London, find out what's really wrong with you." I just laughed it off. It's not like I lived in a third world country. I'd been to the Cleveland Clinic, for gods sake. If they couldn't find what was wrong with me I don't know why anyone in London could.

If I actually had gone to London, I might have gotten an ME diagnosis. But who knows what kind of doctor I would have seen. One who believed it was biological, or one who believed it was psychosomatic?

The last part of the film is particularly disturbing. A woman with very severe ME is being committed to a mental hospital. (There they call it being "sectioned.") She is bedbound. Has day night reversal. She's sensitive to light. She'd only recently regained the ability to speak. I can barely imagine the constant pain she must have been in, just lying there, struggling to talk to defend herself, probably with her eyes closed. She pleads with the doctors and the policemen who have come to forcibly remove her, telling them she has ME, and she's afraid the treatment they want to give her will make her worse. But they don't listen.

Finally, I've been meaning to comment on the comments from the Wall Street Journal article by Amy Dockser Marcus last month. It's called "Wave of New Disabilities Swamps School Budgets" and the main disability she focuses on is CFS. It was featured on the front page I think. You need to have a subscription to read it and view the comments. My dad let me log in as him so I could read them, I heard they were pretty vicious.

The article focuses on one high schooler with CFS. Her story might have been mine, if I had been correctly diagnosed in high school. She keeps trying to stay in school, the school keeps trying to accommodate her, but she keeps getting worse, acquiring more accommodations.

Not surprisingly, for a lot of people this article was the first time they'd heard of Chronic Fatigue Syndrome. And, also not surprisingly, they all thought it was bullshit.

"I used to suffer from "chronic fatigue" while in high school! Fortunately it usually went away as soon as the final bell rang."

"So being lazy is now a medical condition? This is absurd and a huge waste of money."

I can't help but think that a lot of these commenters wouldn't have been so bold if the disease had a different name.

I've never liked the name Chronic Fatigue Syndrome because of the reactions I've gotten when I say I have it. "Oh I think I have that too" "Oh my mom has that but I think it's just depression" But I didn't know a better name for it, so I kind of got used to it. After all, it did describe at least part of what I was going through.

All these comments really opened my eyes. I'm not saying I have CFS anymore. Everyone who's been saying this name is absurd and needs to be changed, I am now completely on your side. Just tell me whose house to pitch a tent in front of.

Here is my own personal selection of comments which I call "I, who never went to medical school"

"I think I just got Taxpayer Fatigue Syndrome."

"Adolescents and teens? We can never discount "don't want to do it" syndrome."

"I have Sympathy Deficit Disorder."

"I remember a lot of kids that suffered from CFS when I was in high school back in the 1990s, but back then they were called "potheads" and "burnouts." I wonder what time this girl gets to bed at night."

"Made-up diseases: Chronic fatigue syndrome, learning disability, and marginal personality disorder.

Whatever happened to words like lazy, stupid, and jerk?"

"Call me heartless, but I'm not buying that "chronic fatigue syndrome" is a real disease, much less a disability. The people I know with "CFS" have been people I've known to be drama queens their entire lives, always taking the max. sick leave or simply not working and living off their spouse and making themselves the center of sympathetic attention whenever and wherever they could in order to never have to do any work nor think about anyone else."

"Chronic Fatigue Syndrome (CFS) & Attention Deficit Disorder (ADD) - Two made up diseases that I never heard of during my childhood! Then they were known by the more simpler terms "Always Lazy" and "Poor in Academics"..."

"I, who never went to a medical school will tell you, that fatigue syndrome is linked to improper diet and toxicity in the human body. How one can solve it, very simple; change diet, fast, exercise, especially jogging. There are good self help books, but one has to find them. More important it is free, and sets you on the path of self reliance."

"After reading the article,I had to go back and do a double-take to make sure I wasn't reading The Onion.

"There is no diagnostic or blood test, no known cause or cure. Patients are diagnosed based on a pattern of self-reported symptoms—which tend to flare and then subside."

What nonsense."

"Here's the bottom line from a physician of 21 years;

Chronic Fatigue syndrome is a bunch of cr@p. The people who "have it" will defend it till the end, to be validated as "sick human beings" and of course to get disability.

Fibromyalgia is a bunch of cr@p. But it is good for us doctors because it is codeword for "this is a crazy patient".

NPR FTW!

So much going on, I completely missed NPR's Morning Edition segment on Chronic Fatigue Syndrome Monday.

I heard about it over the weekend, and was a little worried it was going to be about what was going on in the UK with and ridiculous "Death Threats for Scientists" thing.

But actually it was pretty much all I could have hoped for; the news item I've been waiting for.

It's almost five minutes long, not just a blurb.

It talks about the day to day reality of being bedfast and housebound. The frustration with uninformed doctors. A soundbite from Anthony Komaroff.

Over the years, researchers have identified various brain, immune system and energy metabolism irregularities. Komaroff points to a study done a couple of years ago by the Centers for Disease Control and Prevention. It showed that the majority of doctors now recognize chronic fatigue syndrome as an illness. Today, an estimated 1 million Americans are thought to have it.

But lots of regular folks are still doubters, at least in the experience of Cynthia Johnson of Lake Oswego, Oregon. She says the disbelief makes the disease worse. Johnson is a breast cancer survivor but in October 2009, she was hit with a bad flu that hasn't gone away.

Ms. CYNTHIA JOHNSON: People really admire you for fighting cancer, and they're very excited that you survived. They congratulate you for surviving. Nobody does that, day to day, for CFS. They are just like, oh.

And it ends:

The results of those two studies on whether there's an XMRV connection may be released at a meeting in Canada at the end of the month. Meanwhile, advocates for people with chronic fatigue syndrome are pushing for a name change, to make the syndrome sound like more than a description of someone who just needs a nap.

It's a rare thing with CFS stories, but I feel like these journalists actually really did their homework and were telling the real story. As best they could in five minutes.

Vendetta

I feel like I've been hearing a lot about Simon Wessely lately. But I've kept my distance, emotionally. ME in the UK, I don't think I've ever quite grasped what it's like there.

But I read a quote in Nassim Marie Jafrey's blog from Simon Wessely today, and it's gotten me pretty worked up.

“Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.”

Seriously? And this man is ostensibly baffled that people would find this offensive. I followed a link to its source at the ME association website.

Here is his main argument:

“I think finally, fundamentally, it is that they [PWC's] cannot stomach the thought that this might be a, quote, ‘psychiatric disorder’. By which they mean — not what I mean — ‘it’s imaginary’, ‘it doesn’t exist’, they are ‘malingerers’.”

So what does he mean by "psychiatric disorder?

“Psychiatric disorders are disorders of the brain but expressed in a way that you can’t see them. I think that schizophrenia is a psychiatric disorder, Alzheimer’s is a psychiatric disorder, OCD [obsessive compulsive disorder] and autism are psychiatric disorders. Why is Alzheimer’s listed as a psychiatric disorder? Well, largely because it is treated by a psychiatrist.”

And this is where he loses me. What does he mean by, can't see them? They don't show up in MRI's? There's no blood test for them?

Yet?

Does he honestly believe that the causes of these diseases cannot and never will be seen? Never mind there is already significant evidence for a viral cause of schizophrenia.

What does he think CFS is? "Somatisation par excellence"? The delusion of fatigue? When there is so much scientific evidence against that?

Wessely thinks all his problems stem from the stigmatization of psychiatry. A stigmatization that shouldn't exist but sadly does. People with CFS turn their noses up at psychiatry. They naively demand the search for "biological" causes. People with CFS aren't crazy, but they are in far greater need of therapy than medicine. If they would just understand that mind/body - it's all the same thing! Thus follows, therapy/medicine - same thing!

So why even make a distinction between psychiatry and medicine, other than so psychiatrists can keep their jobs?

Actually he does see it that way:

“Obviously I’m of the view that we should treat these disorders equally, which is, I think, getting rid of the distinction between neurology and psychiatry.”

What? OK, all you psychiatrists, congratulations! You're all neurologists now! All you in your private offices, seeing patients on couches, prescribing anti-depressants one after another in no particular order until you find "the one that works", call yourselves neurologists now! Publish a completely biased and unscientific study about how GET and CBT cure ME, and send it into the American Academy of Neurology for publication. Go try that!

I'm getting out of my depth now, but I have to say, the only way CFS/ME is a "metaphor for our times" is if you use it someway as a metaphor for our times in a novel or a movie. Here in the real world, it's just an illness. Maybe caused by a virus, maybe by something else, but whatever the cause, it can, and will be seen.

I think my feelings right now about psychiatry are best summed up by this great scene from Frasier:

It starts at 12:30 and is only a minute or so:



*Update - A good summary of Wessely's behavior in this letter from Malcolm Hooper

You know it's a good day when...

I am very lucky today because:

1) I drove myself to get my haircut. Made possibly because I finally decided to stop driving all the way across town and go to a salon down the street.

2) I was reading online about ways to cool your apartment without air conditioning. One of my problems is I can open my windows but I never get a breeze. Then I read that you can create a breeze through the "chimney effect" by opening the highest and lowest windows in the building.

My apartment is the second floor of a duplex. I open the front door, walk up some stairs, and my whole apartment is on the second floor. So my lowest window was actually the front door. I got up and went down the stairs, opened it, and came back up. My highest window is a skylight that was put in for roof access. Below it is a bookshelf/staircase with very narrow steps. I had to climb them, and push very hard to lift the window up, and climb back down.

What's great is not just that I was able to do it, but that I knew as I was sitting there reading that I would be able to do it. Most days I am so tired and my body feels so heavy; I would read it and think, "That's nice, I'll ask Jim to do it when he comes over." Most days I sit on the sofa and decide if I want to stand up and walk across the room to turn the fan on.

I'm tired now. If you asked me to get up and do it again, I would be able to do it, but I'd have to think about it. And I'd probably decide I'd have enough for the day and should just rest.

Which is what I'll do now. Hello Satie Pandora station...

3) I was able to write this.

10 weeks

I've just finished my 10th week on GcMAF. I'm afraid I don't have much to report. As of June 22 my Calitrol was at 47.7, up from 33 where it hovered before I started. It's a significant rise, and it means my body isn't just ignoring the GcMAF, so that's good. I had it retested a week ago. I guess I want it to stay elevated, but not get too high. That could be bad.

As of June 24th there's been virtually no drop in my Nagalase: it went from 2.2 to 2.0. I haven't had another test since. Maybe I should ask for one.

I started MTF last week. Some other patients reported feeling immediate changes when they put it on, (it's like a cream you rub into your arm) either jitteriness or more energy, but I don't feel anything.

It seems like this summer is progressing and my health is declining at the same rate as it would if I'd never started GcMAF or MTF.

My VDR phenotype results which are supposed to predict GcMAF response were finally sent to the lab, but it will be another month before I find out what they are. At this point I don't really care.

BGLI, my GcMAF source, has, for the time being, stopped shipping to the US and Canada. Even though I haven't felt any changes yet, and it's not too early, it's also not too late, and I didn't want to stop my treatment halfway. So as I write this my parents are in Amsterdam, a trip they took with the specific purpose of bringing back a three months supply of GcMAF for me from BGLI. I'm determined to do the whole six months.

Then there's the other GcMAF, the bovine kind made with yogurt. It's supposed to be helpful for digestion, which God knows I need help with. 20 or so Cheney patients are starting a trial of it sometime in the next two weeks. One of them read this blog and contacted me, so I'll be able to find out how he's doing. And supposedly after the trial this will be available for all patients to buy, I think.

It's not easy, but I am still determined to believe that any treatment could be the one that makes a difference.

Meanwhile I have not done much this summer. It would have been awesome if I could have gone with my parents to Amsterdam myself, but even though technically I'm sure I could survive the flight, the stress would do a big number on me, on my body, and it would just be a miserable experience. Anyway, I've already been to Amsterdam. It was kind of a side trip when my friend and I were traveling around Germany. I think it was supposed to be just two days, but we decided to stay another because I spent the entire second day asleep. It was the second time on a vacation where a friend, who normally was tolerant of my long sleeps, suddenly got angry at me for it. Because now we're in Amsterdam. "I understand if you want to sleep all day in Ohio, or sleep through college, but not when there's fun stuff to do." Both times it was a disturbing surprise to find out these friends thought I slept all the time because I had nothing better to do. Like I was making some kind of statement. Hadn't I made it clear this sleep thing was beyond my power and my understanding? Apparently not. Probably my pride got in the way.

Been watching a lot of movies. Almost seen all the AFI 100. Latch-hooked my way more than halfway through a welcome mat. Been making Spotify playlists. Most days now I am not able to read. So, I'll be keeping up my Audible and Netflix accounts. Wish I could do something more.

GcMAF/Nagalase/Calcitriol

I've been on GcMAF 30 days now and I'm starting to worry I might be a non-responder. I should probably wait at least another three weeks before I let myself get too concerned, but I can't really help it.

I have to say that it's been a good 30 days, relatively speaking. I still have good days and bad days, but the bad days haven't been as bad, and the good days have been a little better. It's been a little easier to fall asleep at night, and easier to get up in the morning. I really felt better. I didn't know my test results yet, if my Calcitriol levels were rising, indicating the GcMAF was active, or if I had the right VDR polymorphism.

Someone in Europe, I don't know if it was Kenny De Meirleir or BGLI or what, had said that only 5% of the population had the bad VDR type that didn't respond to GcMAF. Recently Dr. Cheney said that among his patients it was more like 50%. I won't know my VDR test results for at least another three weeks.

I haven't gotten the results in the mail yet, but I found out over the phone that my Calcitriol has not gone up, in fact it's gone down a little. But, when I took the test, I had only been on GcMAF for two weeks and had only had 3 doses of 20ng each. It won't be for another two weeks that I get up to the full 100ng dose. So I'm hoping that that has something to do with it.

Nagalase

Dr. Cheney suggested I do another nagalase test to see if that has at least gone down. The results from my first test came, and I've got it. My level was 2.2. The normal/healthy range is 0.32-0.95. So I am not normal or healthy. There isn't a lot on the internet about nagalase, but as far as I understand, it's only seen in cancer, HIV, and certain autoimmune diseases. I looked at a chart in one of Dr. Yamamoto's papers, and found that his HIV patients nagalase levels ranged from 3.06 to 5.58. The healthy control was .23. The goal of the GcMAF therapy is to get the nagalase down to zero.

As for XMRV, as far as I can tell, everyone in the retrovirology world seems to agree with John Coffin that XMRV is a recombinant virus, and a lab contaminant that does not infect humans. On the other hand, I got an email recently from a patient who saw Dr. Cheney in May and he still wanted her to get an XMRV test from VIP. I guess that's all I'm going to say about that, because retrovirology is pretty much impossible for me to understand. All I know is that something in me is making nagalase.

My next calcitriol test is in a little less than two weeks, but even by then I still won't have been up to full dose. Still, I'm hoping it shoots up.

I still have not experienced any GcMAF side effects, like the IRIS effects, flu-like symptoms that last anywhere from 2 days to two weeks.

If I'm not responding to GcMAF, and the good days I've had this month are just a coincidence, or a product of hope, there are two possibilities. One of course is I have the bad VDR mutation. If I don't though, I'm worried that my bad digestion could be the cause. And since gut health is so important to the immune system, maybe I'm screwed.

There might be a study conducted with Dr. Cheney's patients and a Dr. Ruggiero from Italy. He makes a product that combines GcMAF with a raw milk colostrum. It's supposed to be good for gut issues. Maybe if I am not responding to GcMAF this way I will be able to get in on that study, but I don't know, it's a pretty small one.

If GcMAF works for me, and it has for many with CFS, it could make such a difference in my life. Maybe I could go back to college. Maybe I could work. Maybe I could go grocery shopping and cook for myself again. I would love to take dance lessons with my boyfriend. But if things stay as they are, I have to spend most days sitting on the couch. Or if I am up to it, I can sit on someone else's couch, or on a couch at a party. Or even in the passenger seat of a car for a weekend roadtrip.

What I really need is to do some real clothes shopping. I'm sure that's the most energetically demanding chore of a person's life. Walking around to different stores, trying a bunch of different things on. That's the only way I know to maintain a decent wardrobe. I've been shopping a little, in spurts, one, maybe two stores at a time, with my mom or boyfriend to carry things for me. But I have to be done in a half hour, 45 minutes. There's more pressure. I don't always buy the right things. And then my weight is always going up and down so much, so something I bought two weeks ago won't fit today.

There's got to be some workaround for the shopping thing. Maybe my own private tailor who makes house calls?

I don't even go out that much, but I do go out sometimes. And when I do...I get very self conscious about wearing four year old clothes that don't fit. And also, it matters very much what I wear just sitting around the house. It has to be comfy, but I can't stay in my pajamas all day or I'll have nothing to change into when it's time for bed.

Word Fog

Pasting my url into Wordle is a lot easier than writing an actual blog:

"Wordle is a toy for generating 'word clouds' from text that you provide. The clouds give greater prominence to words that appear more frequently in the source text."

GcMAF

(This post will be an exercise on and a lesson in limitations. I've been putting off writing it, waiting until I had enough energy to "make it a really good one" with links and quotes and everything. But I get it now that that's just not going to happen.)

I had my third appointment with Dr. Cheney in March. He is putting some patients on GcMAF now and I said I wanted to start. It was a long process of preliminary blood testing, most of the results I am still waiting for, but I finally got my order through and I think it is shipping today from The Netherlands. If there's no problem at customs it could be here this time next week.

I don't know if I'll be able to start taking it right away, or if I have to wait for more test results. Vitamin D levels are important. I know mine are usually very low. Two years ago my endocrinologist told me mine were the lowest in her practice.

Low vitamin D levels are associated with failure to respond to GcMAF. So I might need to supplement before I start.

With GcMAF there is an Immune Resuscitation Inflammatory Syndrome response, (IRIS) that could last a few days or two weeks. The lower your vitamin D levels, the worse it is, usually. That scares me a little. IRIS means flulike symptoms. The last time I had the flu was, well, scary and unbearable.

Dr. Cheney read me an excessively cheerful email from a patient who was having a positive reaction to GcMAF. I remember he said he was sleeping better and waking up refreshed and able to do much more during the day.

There are also two patients who didn't respond at all. And this makes sense, because they both have the "VDR haplotype polymorphism" which predicts failure to respond in patients with HIV. I've been tested for this but I don't know the results yet. If I have it, it will be crushing. But Dr. Cheney is not yet convinced it is a impossible to work around. He is giving them higher doses of GcMAF and thinks they might respond.

If you are wondering what GcMAF is, don't bother looking on Wikipedia. Until recently there was no entry. Now I think there is one sentence.

I'm just going to paraphrase/quote from Dr. Cheney's GcMAF Protocol and Consent Form, and we'll figure it out together:

GcMAF was discovered by Dr. Nobuto Yamamoto at Temple University in 1990. (The GcMAF wikipedia page sites Dr. Yamamoto's papers.) "He patented a method to semi-synthetially reproduce GcMAF in 1993, (now expired) and by 2002 began to conduct studies using this semi-synthetic derivative in both HIV and cancer patients."

What is GcMAF?

"GcMAF is a partially deglycosylated (?) vitamin D binding protein (DBP) also known as the Gc protein."

(?) So it's a "glycoprotein" with the sugar (glyco) taken off.

What the protein normally does, is bind and carry vitamin D, but in an immune response will be acted on by a specific enzyme that "deglycosylates" it, which changes it's function. So now, as GcMAF, it will "activate, regulate, and expand macrophages" Macrophages are a kind of white blood cell, "the central processing unit of the immune system and capable of modulating and controlling both the innate and cognate immune systems."

So basically, GcMAF is an important part of the immune response. Theoretically, some of my macrophages are not being activated, and they need to be.

NAGALASE

Nagalase, an enzyme also discovered by Yamamoto, destroys GcMAF, "with subsequent loss of effective imunologic function and potential dysregulation of the immune system ensues." Nagalase is found in "most patients with HIV and cancer as well as some autoimmune diseases"

When I was talking with Dr. Cheney, I got the impression that nagalase was actually produced by HIV and other retroviruses, but I can't find that written down. It does say that "Nagalase activity was found to be a better biomarker for clinical status of HIV infected patients than more traditional biomarkers such as the CD4 count."

I am being tested for nagalase activity, but I won't know the results for weeks. I do know that he's had a number of patients tested and they all came back positive.

The impression I got was, that even if XMRV turns out to be a lab contaminant (and I got the distinct impression he doesn't think it will) that nagalase activity in CFS patients points to a retroviral cause anyway.

If you've googled GcMAF, as I have, you'll probably end up looking at a copy of Dr. Yamamoto's 2009 paper Immunotherapy of HIV-infected patients with Gc protien-derived macrophage activating Factor (GcMAF) in the Journal of Medical Virology. Which "demonstrate(s) the utility of GcMAF in eradicating HIV in non-AIDS patients and even maintaining such eradication for years after GcMAF therapy was discontinued. In other words, his GcMAF therapy appears to be able to cure HIV in certain classes of patients and render the patient immune from HIV infection."

So why doesn't everyone know about this?

Apparently, Dr. Yamamoto is "reclusive and unapproachable." And ostensibly not a promising source of revenue. (Though the GcMAF I am ordering from BGLI is not cheap, but maybe it is by prescription drug standards. I don't know.)

More quotes from the protocol:

"His methods of patent in 1993 was inherently weak as GcMAF, as a natural substance, cannot itself be patented and no large commercial interest ever bought a license from Yamamoto to improve the rate and quality of GcMAF clinical studies and make high quality GcMAF widely available"

This is supposedly why we all have not heard of it.

"To make matters worse, there have emerged many GcMAF products, available on the internet from around the world, of questionable quality and efficacy...There are also some fairly severe though transient side effects in a few patients that need physician assistance and guidance to negotiate safely."

So, you know, don't try this at home, without help from your doctor.

And finally:

"...treatment with GcMAF does appear to be very promising and relatively safe for patients with disabling CFS and more than 100 CFS cases have been treated successfully in Europe by two separate groups in Belgium and The Netherlands. The non-response rate appears low and currently sits at about 5% and perhaps related to rare Vitamin D receptor polymorphisms..."

which I am being tested for, still awaiting the results.

(emphasis mine)

So based on GcMAF being a naturally occurring substance in the human body, and the fact that it's been studied since 2002, I am convinced it's safe enough to try. And I do have high hopes.

As for the whole stem cell thing, it looks like that's out. Dr. Neil Riordan, who runs the clinic in Panama I would have gone to, is now making something from stem cells, some kind of cream you can apply topically. It's called MTF. I had Dr. Cheney write down what that stands for but I can't really read it, but it looks like "Mesenchymal Trophic Factor".

It's something I'll be starting 18 weeks after I start GcMAF. He said he gave some to a relative with Parkinson's and that it really helped his tremors, and that he was able to cut the lawn on the riding mower for the first time in years or something. When we talked though it had only been a day or two and he didn't expect it to last, at least not without another application. I don't know how that turned out. I guess I can ask at my follow up visit in six months.

It's been a rough few months. And at the lowest times it's been the thought of the GcMAF that's kept me going. Did I mention my hopes are up?

Our Schizophrenic Cousins

Pity the poor CFS sufferers and their doctors, alone in the world, toiling in obscurity, trying in vain to prove to the world that their disease is not mental but viral in origin. Or so I thought.

Three years ago, when I was still just learning about CFS as a biological illness, I read an article in a science magazine about a possible viral or bacterial cause for schizophrenia. “Of course!” I thought. So obvious! So elegant! This must be how people felt when The Origin of the Species was first published!

So I was surprised a few months ago when I saw an article in Discover Magazine about the "Schizophrenia virus controversy", What? Those stubborn psychiatrists just can't let go of their precious mental disease? Come on!

I read the first few paragraphs, but I was tired, and hadn't been able to do much reading lately. So I opened a tab for it in my browser and it sat there unread, for months. I finally just read it tonight and I am KICKING myself for it because it is the most mind blowing and informative story I've read all year.

Please read The Insanity Virus.

It turns out it's not just a virus or bacteria they're talking about. It's a retrovirus. An endogenous retrovirus. I don't know as much as I'd like to about virology, but I do know that endogenous retroviruses, ervs, are supposed to be harmless. The virus, HERV-W, is also implicated in MS and bipolar disorder.

Reading about this virus was eerily like reading about CFS, though, disappointingly, CFS and XMRV are never mentioned.

It is a very easy, very enlightening read. If you are not yet convinced of it's relevancy to your life, I have some quotes prepared that may change your mind. Basically I'm going to quote heavily from the article and comment on it.

1) The Birth Month effect leads to the suspicion of an infectious cause for Schizophrenia

Even more puzzling is the so-called birth-month effect: People born in winter or early spring are more likely than others to become schizophrenic later in life. It is a small increase, just 5 to 8 percent, but it is remarkably consistent, showing up in 250 studies. That same pattern is seen in people with bipolar disorder or multiple sclerosis.

"The birth-month effect is one of the most clearly established facts about schizophrenia," says Fuller Torrey, director of the Stanley Medical Research Institute in Chevy Chase, Maryland. "It's difficult to explain by genes, and it's certainly difficult to explain by bad mothers."

The facts of schizophrenia are so peculiar, in fact, that they have led Torrey and a growing number of other scientists to abandon the traditional explanations of the disease and embrace a startling alternative. Schizophrenia, they say, does not begin as a psychological disease. Schizophrenia begins with an infection.

(Italics mine. And by the way, I was born in February, my healthy siblings were born in August and late April.)

2) The virus

If Torrey is right, the culprit that triggers a lifetime of hallucinations—that tore apart the lives of writer Jack Kerouac, mathematician John Nash, and millions of others—is a virus that all of us carry in our bodies.

Emphasis mine, because if this is true, then it wouldn't matter if XMRV or whatever it's called is an erv.

We imagine viruses as mariners, sailing from person to person across oceans of saliva, snot, or semen—but Perron’s bug was a homebody. It lives permanently in the human body at the very deepest level: inside our DNA. After years slaving away in a biohazard lab, Perron realized that everyone already carried the virus that causes multiple sclerosis.

3) The following passages are about schizophrenia but you could easily start reading them and think they were about CFS:

Schizophrenics also showed signs of inflammation in their infection-fighting white blood cells. “If you look at the blood of people with schizophrenia,” Torrey says, “there are too many odd-looking lymphocytes, the kind that you find in mononucleosis.” And when he performed CAT scans on pairs of identical twins with and without the disease—including Steven and David Elmore—he saw that schizophrenics’ brains had less tissue and larger fluid-filled ventricles.

By the 1980s he began working with Robert Yolken, an infectious-diseases specialist at Johns Hopkins University in Baltimore, to search for a pathogen that could account for these symptoms. The two researchers found that schizophrenics often carried antibodies for toxoplasma, a parasite spread by house cats; Epstein-Barr virus, which causes mononucleosis; and cytomegalovirus. These people had clearly been exposed to those infectious agents at some point, but Torrey and Yolken never found the pathogens themselves in the patients’ bodies. The infection always seemed to have happened years before.

Again, emphasis mine.

Here just read XMRV for HERV-W, PWCs for schizophrenics, and fatigue for psychosis:

The initial infection could then set off a lifelong pattern in which later infections reawaken HERV-W, causing more inflammation and eventually symptoms. This process explains why schizophrenics gradually lose brain tissue. It explains why the disease waxes and wanes like a chronic infection. And it could explain why some schizophrenics suffer their first psychosis after a mysterious, monolike illness.

Sound familiar?

And here is the last paragraph, which brings hope:

She is running a clinical trial to examine whether adding an anti-infective agent called artemisinin to the drugs that patients are already taking can lessen the symptoms of schizophrenia.

Even after all that, many medical experts still question how much human disease can be traced to viral invasions that took place millions of years ago. If the upcoming human trials work as well as the animal experiments, the questions may be silenced—and so may the voices of schizophrenia.

(Artesunate, a derivitive of artemisinin, is what I am taking along with wormwood per Dr. Cheney's instructions.)

So besides the eerieness, the main thing I took away from this article is that CFS does not have to shift this paradigm alone. Schizophrenia is "one of the most common mental diseases on earth, affecting about 1 percent of humanity" A lot is at stake. People are doing research on this.

*After I posted this I did a quick google for "HERV-W cfs" and the first thing to come up was this thread on Phoenix Rising.

Is this a life?

I know a few posts ago I wrote that I was feeling better. Well, forget about that. I am worse than ever.

I play Snood and Geosense. Any little online game that I can play without having to think. No chess puzzles. No crosswords. Just shooting little colored circles at other colored circles or clicking on cities on a map. For hours. Compulsively. I want to stop, but I don't, or can't. This happens sometimes and it's been going on for years. I tried deleting Snood from my hard drive for a few years but there are always other games free online that I will find my way to.

I suspect I do it because I can't do anything else. My biggest complaint right now, what bothers me more than my terrible digestion and back pain, is the inability to focus. But it's easy to focus on Snood. And if I tear myself away, what will I do if I can't focus on anything?

A few years ago I had been playing Snood for hours, compulsively. It must have been around this time of year because I remember my friend was over watching the Oscars. And for some reason I took an Adderrall. And after 15 minutes I didn't want to play Snood anymore. It was amazing. I was free. It was that easy.

But I don't think I have any now. And even if I did, they have some bad side effects sometimes. They're not something you can take regularly for too long. I know, I tried.

So that is one of my more obvious addictions/vices. But I think I have another: school. And yesterday I fell off the wagon.

School is a good thing, generally, but not for me. Not right now. I am too sick and school makes me sicker. I knew it was bad for me but I kept going and dropping out when I had exhausted myself, and going and dropping out...

And yesterday, even though I am worse than ever, and maybe because I am worse than ever, I let myself entertain the idea of online classes. I gave my contact info to a website and a minute later my phone was ringing. A representative wanted to talk to me about my educational opportunity.

We're just like a real university! We're for people with a burning desire to work in the career of their choice. You have to commit 20-35 hours a week to your classes...

Then I knew this wasn't for me and I tried to say so, I may have a burning desire but I was all burnt out so it didn't matter. But I was talking to a salesman so the conversation didn't end quite that quickly. But even after we hung up I kept thinking about it. It was like a little devil on my shoulder. Maybe you could do 20 hours a week if you didn't have to get dressed or drive anywhere for the classes or walk around a campus...you won't know unless you try...won't it feel good just to try?

And then I wanted to talk to someone about it, so I called my mom, who is always saying I should look into online courses. So she was happy to hear that I did, which had the unexpected effect of making me sad. We talked awhile and it actually ended up sounding like I was going to do it...even though I knew I wasn't.

20-35 hours a week

I think about my typical day. Waking up is hard, and nowadays, usually a little after noon. But once I've been up for 15 minutes and brushed my teeth and done my medicine routine, that's when I feel my best. But it lasts for half an hour at most. Then I'm weak, maybe from reading too much, maybe from not eating. Maybe for no reason. And then it's time to eat something or I will get even dizzier and fainter. I go to the kitchen (most days, there's been times I am too tired and just wait all day for my boyfriend to come home from work and get me food.) But usually I go to the kitchen and open the refrigerator. Sometimes I might stop there if there's nothing I can just grab and eat. Sometimes if anything requires mixing or heating up I give up and go back and lie down. But I'd say more than half the time I can heat something up or there is something I can just grab. So I eat. And then I start to feel the coma coming on. I feel poisoned, dizzy. I might lay down and just close my eyes. I might go to sleep. I might stay awake but be useless. And this is how I feel for the rest of the day, maybe I will feel better again around midnight.

At the beginning of the month I could read real books. But not now. I'm listening to The Immortal Life of Henrietta Lacks. It's really good. But I can't listen to it today. Today is one of those days I am feeling sorry for myself and don't want to listen to stories about people being doctors and journalists and driving and eating and living lives they apparently take for granted.

I'm afraid I haven't made my point but I have to stop writing and just post this soon or it will never get finished and posted.

I read Toni Bernhard's How To Be Sick last month. I really liked it. There is some great advice in there. Good attitudes I've tried to adopt. But it doesn't happen overnight. She says that when you feel sad about something you can no longer do, instead, focus on feeling happy for the people who can do it. Easy at first, but keeping it up as an attitude...will take time. She also says that when you are feeling sorry for yourself have compassion for yourself and compassion for everyone else who is suffering. It's a beautiful idea. But easier said than continually done. It's a Buddhism inspired book, but she says you don't have to be a buddhist to benefit from it or believe in God or anything like that. But there is one thing you do have to do she doesn't mention that is just a big a leap. You have to change your idea about what a full life is supposed to be. You have to be OK with being sick.

She was a law professor when she got sick and now she seems to be mostly housebound, like me. She says she discovered opera and tennis after getting sick. So on a night when her husband is going out with her family and friends and she is sad that she can't go, she tries to make the best of it and listen to an opera CD.

Today I got up and felt pretty good, considering. I was able to unload the dishwasher, which usually means it's a good day. Which is good, because last night was terrible. Jim was over. I don't remember what we did. Watched two episodes of Monk on TV and then he just hung around while I addictively played Geosense and ate the gluten free cookies I made him get me. I wanted to tell him about my day, about the online classes, but I was too tired to talk.

It's been 3 hours now since I had breakfast and I'm starting to come out of my coma...but I didn't eat much and I'll have to eat again soon. After I ate I sat on the couch and I asked myself, what can I do now? Can I do the Monday crossword? No. Can I read? No. Can I listen to an audiobook? No, no. Can I listen to music? Maybe... I thought of Toni Bernhard and her opera. I put on a classical radio station. At first it's energy and complexity annoys me, but after a few minutes I'm enjoying it and I close my eyes and lie down.

Lying on my stomach. Listening to classical music on the radio. I know this might be all I do today. "Is this a life?" I ask. And I know I have to answer yes, it is, because the other answer will be overwhelmingly depressing.

*My days are not totally books and music. Before I ate and right after I also talked to or left messages for 3 different doctors and wrote an e-mail. I think about doctors and medicines all the times. It just didn't just fit into this post.

Let’s all give each other a pass, shall we?

I read David Rakoff's new book of essays "Half Empty" last month. The first essay is about an interview he did with a psychologist who wrote a book called "The Positive Power of Negative Thinking". She doesn't say pessimism is better than optimism, but that they both have their attributes as well as their blind spots, and whichever one you are, half empty, or half full, things will probably turn out the same regardless. I liked that.

The last essay was about his second cancer diagnosis. He had Hodgkin's disease when he was 22, and now in his 40's, he was diagnosed again with cancer and faced with the possibility of of losing his left arm because of a tumor. Fortunately for him he beat the cancer and kept his arm. But there was a long time where he didn't know how things were going to turn out. His account of his friends reactions to his illness is hilarious:

A friend asks if I’ve “picked out” my prosthetic yet, as though I’d have my choice of titanium-plated cyborgiana at my disposal, like some amputee Second Life World of Warcraft character. Another friend, upon hearing my news, utters an unedited, “Oh my God, that’s so depressing!” Over supper, I am asked by another, “So if it goes to the lungs, is it all over?” Regrettably, very possibly, I reply, and when I go on to mention as how they no longer give much radiation for Hodgkin’s he says, “Well, you got twenty-five years out of it,” as if the radiation was a defenseless washing machine I was maligning, and what did I expect, really?

But here is the part I wish I could tattoo on the inside of my eyelids as a reminder for myself:

...But here’s the point I want to make about the stuff people say. Unless someone looks you in the eye and hisses, “You fucking asshole, I can’t wait until you die of this,” people are really trying their best. Just like being happy and sad, you will find yourself on both sides of the equation many times over your lifetime, either saying or hearing the wrong thing. Let’s all give each other a pass, shall we?

Yes let's! Because as much as I get upset when I think someone has said the wrong thing to me, I worry much more about when I think I've said the wrong them to someone else who's suffering. It's all awful and awkward. We're all trying our best. I hope I can always remember that.