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?