There’s something about this magical place that makes ME/CFS patients feel better, there’s no doubt about it. Even people that are skeptical of this effect at first later admit that they were able to do more or surprisingly checked a symptom off in hindsight.

A few samples:

1) Dr. Jamie Deckoff-Jones talks about feeling better upon landing on the big island: “I’ve been in Kapa’au, on the Big Island, for the last two weeks seeing patients and have felt noticeably better since I arrived. Pretty definite cause and effect. It’ll be interesting to see if it lasts through a third week, when the benefit of the altitude change should be over; this is the first time I’ve stayed so long.”
http://treatingxmrv.blogspot.com/2011/09/random-thoughts-upon-returning-to.html

2) Poster “PokerPlayer” on Phoenix Rising also feels significantly better, including improvement in one of the hallmark symptoms of ME/CFS, exercise intolerance: “When I go to Hawaii I get a big difference in depression and physical tolerance to exercise. I am going on the theory that it is the clean oxygen that helps with this. So, I am going to try hyperbaric oxygen therapy hopefully soon. However, there is also some theory that mold can be aggravating this disease, and I live in washington state, one of the worst places.”
http://forums.phoenixrising.me/showthread.php?13799-Mold-or-Oxygen-Feel-better-in-Hawaii

3) Poster “DannyBex” on Phoenix Rising reported: “I felt “better” in Hawaii too — back in 2007 for six days.”
http://forums.phoenixrising.me/showthread.php?13799-Mold-or-Oxygen-Feel-better-in-Hawaii

4) Friend #1 is housebound in the states, loses PEM in certain locations, including Hawaii. Was able to tolerate alcoholic drinks in Hawaii.

5) Friend #2 is housebound in the states, has signs of autoimmune disease, has been sick for over 20 years. Ex-ampligen moderate responder. Was able to do a lot more in Hawaii without crashing and had less pain, although did not lose PEM.

6) Friend #1 has heard from 3 other patients that also feel better in Hawaii.

I have plenty of examples of patients feeling better on other islands, including Bainbridge and Carribean islands, as well as certain beach cities such as Yucatan. However, a hypothesis about a single location is much more controllable.

So what is it about this place?

1) Some say mold, but the humidity would make it unlikely that the mold levels there are lower than most places in the continental US.

2) Some say a particularly noxious strain of biotoxin that is a result of modern civilization, nicknamed “ick” by some in the mold avoidance community, but there is plenty of industrialized activity in Hawaii. To test this hypothesis out, we would have to have large numbers of people compare how they feel in industrialized cities like Honolulu versus how they feel in more rural areas such as cities such as Kapa’au where Dr. Jamie Deckoff Jones is.

3) Some say oxygen saturation, but plenty of cities that are at sea level and humid are hubs for ME/CFS and do not seem to exert the same effect. Also, most ME/CFS patients that get hyperbaric treatment do not experience the same lift.

4) Some say air quality, and this seems like a reasonable hypothesis, especially in areas in Hawaii that get the nice trade winds and are away from VOGs.

My personal opinion is that it’s a mix between the amount of modern civilization and industrialized chemicals used and the trade winds and ocean breezes that tend to blow everything away from any particular coastal point on the island. Again, people tend to feel good right on the beach in the continental US. Dr Myhill suggests that to get away fro mold, you either get on top of a mountain, go to the desert, or hit the beach. Mycotoxin experts say right on the beach, not one block away. So this “right on the beach” effect is surely a factor in what’s going on with Hawaii.

If I had my way, I would do ampligen in Hawaii. It’s too bad that the open label trials are all being held in places that no avoidance experts would consider “good”.

– Incline Village is the heart of the epidemic of ME/CFS, Osler’s Web points at some type of toxic exposure during the epidemic, and most important to me: I feel terrible there
– Salt Lake City during the winter has some of the worst air pollution in the country. Some days I feel pretty good there, others I have trouble taking a deep breath.
– the Bay Area and Charlotte are both known for mass-producing ME/CFS patients. I was one that got sick in the Bay Area so it’s got that going for it. Charlotte also has some of the worst smog and ozone levels in the nation.
– Manhattan is only the industrial mecca of the world.

Bloody weird logic if you ask me.

Update: I forgot that Dr. Klimas is setting up shop for a trial in her private clinic in Kendall, FL.  Of all the places to get amp, would this be the best?  One, it’s near the southern tip of Florida, at around the same latitude as the Bahamas where many patients report feeling good.  2) It would allow patients to live right on the beach, which has been established by now as having beneficial effects on its own, without a long commute to the doctor’s office (ampligen patients want to minimize commutes as much as possible). 3) it’s right next to the Everglades so nearby industrialization is reduced

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About CityChanger

This blog is about my participation in a clinical trial for ampligen, an experimental immunomodulatory and antiviral drug, for ME (Myalgic Encephalomyelitis).

2 responses »

  1. When I talk to people with ME/CFS, I find that they very often report having felt much better in a particular location or much worse (often with weird symptoms) somewhere else.

    Very often, though, they don’t necessarily attribute it to anything physical about the place. When it happened to me (pre-avoidance), I attributed it to psychological factors: I “liked” Aspen (this was 15 years ago — I don’t recommend it now) and “hated” Delaware.

    So I would encourage people to think about not just how they feel _in_ certain places, but also how they feel _about_ them. Often that’s a good clue.

    Since it seems important to get some more systematic information about how people with ME/CFS respond to different places, Paul Beith and I have put together a board where folks can record their experiences. Hopefully if we get a lot of people to contribute, we will gain a sense of just how strong and consistent this effect really is.

    Even if folks aren’t sure that they think the Locations Effect is real, and _especially_ if they disagree with my or other people’s assessments, please share!

    http://locationseffect.proboards.com/index.cgi?

    Best, Lisa

  2. B says:

    Greetings from Mexico CityChanger! I have had positive experiences in Hawaii- my fatigue doesn’t go away, but almost everything else improves. I can handle alcohol, coffee and adderall give me energy instead of causing neurons to fire randomly, and I can hike/swim without PEM. My guess is that it has less of a type of a mold to which our bodies our over-sensitized, but that’s just a guess. I don’t think it’s air quality per se, because San Francisco and the Bay Area theoretically have pretty good air quality.

    I grew up in South Florida, so have some thoughts on getting Ampligen through Klimas. The winters are great down there, and living on the beach can actually be affordable, especially with the housing crash. Air conditioning acts as a de-humidifier, so mold is more limited than you would expect in such high humidity. I haven’t been there since I got sick, but I wouldn’t be surprised if I felt better there. That said, the summers are insanely hot so you will have to spend a lot of time indoors (or in the ocean….)

    -Friend

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