1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

Michael Crawford and the Locations Effect

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by slayadragon, Mar 10, 2012.

  1. Esther12

    Esther12 Senior Member

    Messages:
    5,294
    Likes:
    5,603
    When I was a child I had more sinus problems, and they always cleared up when we went somewhere hot and dry, but not when we went on holiday to places in Europe.

    I've not done much holidaying since falling ill, but it wouldn't surprise me if different conditions do put different strains on people's bodies. Alternatively, just spending a lot of time relaxing and playing about will be helpful in lots of ways too.
     
    Firestormm likes this.
  2. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,508
    Likes:
    2,041
    London
    It's a huge leap to assume that Micheal Crawford recovered using the "location effect" or mould avoidance.

    We don't even know if he had CFS diagnosed by any reliable means.

    Having joined a yahoo group to look at locations I saw very little reported that was reliable or of any quantity so I gave up looking at this. I'm better by the sea in particular climates but to drag this out and claim that people ME or CFS (unless it is something like the Oxford criteria) are being cured in large or reliable numbers is misleading.

    There's always going to be people who claim to be "cured" by any treatment and that's how it been for a long time.
     
    dannybex likes this.
  3. Esther12

    Esther12 Senior Member

    Messages:
    5,294
    Likes:
    5,603
    I agree that it's all rather silly speculation, but I think the tone of the thread mostly recognises that... but I'd still be pleased if NICE decided to fund four year holidays in tropical locations!

    I don't know if anyone has CFS diagnosed by any reliable means!
     
    Plum, justy and Firestormm like this.
  4. slayadragon

    slayadragon Senior Member

    Messages:
    1,098
    Likes:
    393
    twitpic.com/photos/SlayaDragon
    The whole point of the story was that Michael Crawford himself is saying that moving to New Zealand "cured" his illness. That is the definition of the "Locations Effect": that people with this disease often report feeling better or worse when they travel to different places.

    >Many people with neuroimmune disease have stated that they feel better in some locations than in others.Some report feeling almost wholly well when they go some places. Others report getting much sicker (sometimes permanently) after visiting or moving to particular places.

    http://locationseffect.proboards.com/index.cgi?board=intro&action=display&thread=33

    Whether Crawford has ME/CFS, I don't know for absolute sure. Obviously his illness was not as severe as most of that of most of the folks on this board, but this is a particularly sick group of people. I imagine Crawford has good access to doctors and had motivation to seek out proper diagnosis and care, but I can't be absolutely sure of that. I don't see that ME/CFS is such a glamourous disease to have that he would go out of his way to say he has it when he really doesn't, but perhaps I'm missing some motive of his.

    Whether Crawford feels better in his home in New Zealand because there are fewer toxins there or because of some other factor has not yet been shown. That is the whole reason that I am here talking about this effect: in the hope of getting researchers to look at the phenomenon.

    If every time someone brings up the Locations Effect, people in this community say, "There's not enough evidence for this, shut up already," then no evidence will be generated! This has been going on for 32 years now, since Erik met someone who appeared to have what was later named "CFS" in the Bay Area (it was diagnosed as "doctor seeking behavior").

    I suppose I can understand why people would rather that the illness be caused by a retrovirus rather than by toxins, because the implication is that it might be treated with antiretroviral drugs.

    I'm not sure why people would rather that the illness be caused by a mystery rather than by toxins though. If toxins are playing a role here, don't we at least want to know about it?

    Best, Lisa
     
  5. SOC

    SOC Moderator and Senior Member

    Messages:
    5,362
    Likes:
    6,422
    USA
    He doesn't need any special motive -- all that's required is that some NHS or NHS-influenced physician diagnosed him with "ME". That could easily mean he was fatigued and/or burnt out, not that he had neurological or immune symptoms. It's not like there's a high likelihood he got a good ICC-type diagnosis in the UK.

    Sure, it would be nice if a few years on the beach was the prescribed cure for ME. I'd go for it in a minute if my insurance would pay for it. :D
     
    Plum likes this.
  6. slayadragon

    slayadragon Senior Member

    Messages:
    1,098
    Likes:
    393
    twitpic.com/photos/SlayaDragon
    Yes, I agree. What we need is biomarkers, so that there is no doubt who has ME.

    The fact that the Locations Effect has been reported by a number of people who have been rigorously diagnosed with ME/CFS suggests that it's not out of the realm of possibility that Crawford has recovered from actual (if apparently moderate) ME as well though.

    This sort of treatment would be a lot cheaper than Rituximab, likely! So maybe they should pay for it.

    Best, Lisa
     
  7. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,976
    Cornwall England

    Remember (not personally obviously!!) when all the rich folk in England etc. used to sail across to Egypt for the dry climate? Was a regular thing for a lot of folk. Get away from damp, and dreary, wet yuckky English winters and go sit in the dry heat of Egypt for a few months!!

    A cure for all maladies.....

    .....except dysentery, and other far nastier things!! :D

    I do remember when sick in Jersey that folks there (some of them - a few of them - a handful) had 'concerns' that the French Nuclear Power Station on the opposite (and up a bit) coast was the 'cause' of all the Island's maladies. It even stretched (or especially stretched) to ME!! One woman there I do remember was selling some sort of flower pills or something as a cure-all.

    Sorry. I digress :D
     
  8. justy

    justy Senior Member

    Messages:
    2,679
    Likes:
    2,899
    U.K
    I agree that it is important for ALL possible avenues of research to be explored, including molds etc. Of course this is a much bigger question about the way the modern world is, with a toxic laden atmosphere and sick buildings etc - a big topic!

    I have to point out though, that Michael Crawford doesnt claim to be cured of M.E - merely improved and living a good life, and he dosent put this down to the physical location so much as the lifestyle change. I would also question your use of the term 'moderate' i consider myself moderately ill, but can neiher garden nor sail and am manily housebound. I see no reason to disbeliev anyhitng he says, but am a bit uncertain of the spin being put on his words here.

    I do think a thread on the locations affect etc to be a good thing, but i wonder if we should leave Michael Crawford out of it!
    All the best, Justy.
     
    dannybex likes this.
  9. slayadragon

    slayadragon Senior Member

    Messages:
    1,098
    Likes:
    393
    twitpic.com/photos/SlayaDragon
    Michael Crawford talks about CFS and about the "good fresh air" in New Zealand. He may not have been as sick as some people on this board, but I do think it sounds like he had this disease. It's nice to see him speak up for the kids who have it.

    http://blogs.abc.net.au/queensland/2012/03/michael-crawford-the-story-of-my-life.html


    Host: How did it feel then when you found that you had Chronic Fatigue Syndrome?

    Michael Crawford: Obviously it hit me hard. I was doing a musical called Woman in White, an Andrew Lloyd Weber musical about five years ago. I created for this character what I thought was the most wonderful costume, this great big fat suit. I played this Italian count, Count Fosco. I thought it was just the bees knees, being so clever. I used to lose about a pint of water a night in this suit. Slowly I became more and more unwell -- I damaged my immune system. I lost nutrients and things from my body. I got this virus and thought it was flu, and everyone else thought it was flu. Two or three weeks later, I still had the same condition. There was aching, tiredness, fatigue, and I just couldnt get better. So I started lots and lots of tests. And to this day, with doctors, theres not too much understanding of the condition. And thousands and thousands of people have it, thousands of young children have it. Its quite -- its so debilitating for a child not to have the strength to go and play with other children or to have a normal life. Theyll offer some medication that will maybe buck you up or something. That didnt seem like a very good solution to me, because they really didnt know what they were giving me. So I decided just to go. I went out of London and to New Zealand. I bought a house there, being fortunate enough to be able to do so. I got a small boat and I changed my lifestyle completely. I took every bit of pressure that I could out of my life. And I sailed, I grew vegetables, I smelled the roses for a couple of years. And by golly, I got better. My life started to change and I got more strength back. I felt well enough 18 months ago to go back and do The Wizard of Oz in London, at the London Palladium. Ive just finished, and hopefully Im going to retain this feeling.

    Host: New Zealands good for you. Its a beautiful place.

    Michael Crawford: Yes, it is. Good fresh air.
     
  10. justy

    justy Senior Member

    Messages:
    2,679
    Likes:
    2,899
    U.K
    Thanks for the quote above, im so pleased for him that he was able to do that and recover. On the other hand he needs to be aware that he could relapse and be worse if he goes back to a more normal life. This happened to me - i thought i had recovered the first time through similar measures, but am now very sick again.
    All the best, Justy.
     
  11. Jenny

    Jenny Senior Member

    Messages:
    1,228
    Likes:
    184
    London
    I doubt 'good fresh air' had much to do with it. Many improve with time anyway. I did, 95% well for years, in the same house as I got ill in.

    And when I was in one of the places in Europe for a month that is said to have the most unpolluted air - St Michel l'Observatoir in France - (they have an observatory there because of the lack of pollution) I didn't feel any better. Perhaps not long enough to give it a good test, but I've never found that different places make much difference, apart from warm climates, sometimes.
     
    dannybex likes this.
  12. slayadragon

    slayadragon Senior Member

    Messages:
    1,098
    Likes:
    393
    twitpic.com/photos/SlayaDragon
    Were you working when you got sick, Jenny?

    I've never found the government's assessment of air pollution to have much correlation to how I feel in different places. They're mostly looking at particulates, whereas my trigger seems to be the toxic molds and other biotoxins that they are not measuring.

    Thanks, Lisa
     
  13. Jenny

    Jenny Senior Member

    Messages:
    1,228
    Likes:
    184
    London
    I was working about one day a week. Pregnant and with a one-year old.
     
  14. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,508
    Likes:
    2,041
    London
    I'm fine with air polution and coped better with air living in a city than in the country. Pollen in the country was far worse for me plus there is the risk of crop spraying etc.

    New Zealand also has drinking water with chemicals like flouride in many area. I remember once staying in Auckland and nearly being knocked out by the stench of chemicals as I ran a bath.

    We need to bear in mind that Micheal Crawford is an actor and the implications of returning to his career and particularly on stage. One actress with ME that I knew refused to make it public that she has the disease because of the insurance implications of being involved in shows on the stage and on film.

    There isn't enough evidence here that he had anything and been cured by anything (or by avoidence of anything). The UK oxford criteria is very weak if that was used to diagnose him.
     
  15. justy

    justy Senior Member

    Messages:
    2,679
    Likes:
    2,899
    U.K
    I dont doubt Michael crawfords diagnosis, im just not sure it was the location that cured him. I lived in a remote rural near coastal part of NZ for a year and there was terrible chemical pollution from crop spraying - which they did by air! we were'nt even warned. If you heard the plan ecoming you would have to quickly run inside and close all the windows!

    I admit though that i feel best in hot dry climates health wise, but i dont handle heat well (or cold) On the other hand ive only ever travelled before i got sick and when i was in a remmission (like jenny i didnt do anything specific apart from try and look after myself and rest) I dont know how it would be now i am more sick. The hot dry. like you get in the s o france for example helps my lungs enormously. (i have lung fibrosis) Living in a cold damp place like Wales is not good for my lungs.
    All the best, Justy.
     
  16. Jenny

    Jenny Senior Member

    Messages:
    1,228
    Likes:
    184
    London
    Hi Justy

    Although I got better while living in the same house as that I got ill in, I did actually do quite a lot of things to try to improve. In particular colonic irrigation, and acupuncture and Chinese herbs. Though I may have just got better with rest, like you. Will never know.

    Hope your remission with simple measures encourages others that it is possible to get better!
     
  17. justy

    justy Senior Member

    Messages:
    2,679
    Likes:
    2,899
    U.K
    Hi Jenny, sorry i jumped tpo conclusions - its so hard to be really clear on a forum. I did actually "do" quite a lot, but meant i didnt have any conventional testing or treatments.
    I used accupuncture, frequent massage, osteopathy, nutrition, meditation - i tried everything alternative i could think of. I wasnt diagnosed and not as ill as i have been this time around, could still functional fairly well at times and only had a brief spell bed ridden that time. I often used to joke that for me just trying to keep my head above water - to ne halfway normal, was immensly hard work and that other people didnt have to do those things just to get through the week. Now i know i had M.E it all makes perfect sense. It was about 4 years between becoming very ill and remmission to (near) normal. I'm coming up to 4 years again this time and things are improving, but they have been harder this time.
    Justy
     
  18. slayadragon

    slayadragon Senior Member

    Messages:
    1,098
    Likes:
    393
    twitpic.com/photos/SlayaDragon
    The conceptualization here often is assumed that the toxins are acting like an allergen -- that is, that people should get better right away if they move out of a moldy house, or that they can't get better if they stay in a moldy house.

    That doesn't seem quite right. It's more that the poisoning from the toxins is putting stress on the immune system, and other systems of the body.

    At a moderate level of being poisoned, people can use various measures to strengthen their system and make a lot of gains or even get a remission. I did that, living in my own moldy house, early on.

    Treating yeast and eliminating gluten are two really common ways that people can do this (because candida flare-ups and gluten reactivities are caused by mold exposures), but really anything that helps more people up in terms of their functioning can help. Things related to toxins (such as massage, colonics, Perrin technique) might be particularly helpful at this point.

    But if people get further along in the illness, with a higher toxic burden, then eventually those other things may stop working as well for them. That's certainly what happened to me, as the years went by and my body became more and more toxic. After I got to a better environment, a variety of things started working much better again.

    Based on my reading of what happened to Crawford, he got away from his exposure and to a good place early in his illness, when his body was still only moderately toxic. He thus was able to recover. My hope is that eventually, that can be the template for everyone who is diagnosed with the illness: clean up the environment or move to a good place. If people do that, they might have a shot at getting better. If they stay in a bad place for years or decades longer, their bodies will become increasingly toxic and recovery likely will be much more difficult.

    At least, that's how I'm seeing it.

    Best, Lisa
     
  19. justy

    justy Senior Member

    Messages:
    2,679
    Likes:
    2,899
    U.K
    Hi Lisa, that makes sense to me as a theory of what could be happening.
    I am concerned still to discuss what those who cannot travel are able to do - do we have to put up with being ill becuase we cant live somewhere else? this is a serious question that needs some consideration, as does the general issue of trying to recover when most of ones energies must naturally go into children, partner, home, work etc. I am worried that only the very priveledged and those with no ties are able to pursue this method and all the rest of us are stuffed.

    All the best, Justy.
     
  20. slayadragon

    slayadragon Senior Member

    Messages:
    1,098
    Likes:
    393
    twitpic.com/photos/SlayaDragon
    The idea that some countries or some cities are so problematic that no one with severe ME/CFS can get totally well or to "mostly recovered" status in them is disturbing. Still, I tend to think that even if toxins are responsible for the disease, people should be able to make progress by moving to a better location than the one they're at, even if it's not pristine.

    If I were living in a problematic location and couldn't move, I would at least want to do an ERMI of my house, to see if it was really problematic itself. If so, I would move to a place that was better and think about following the conventional rules that doctors like Shoemaker suggest (wash everything, discard items that can't be washed).

    And I would start to pay attention to how I felt in different local locations, and -- if I found a location where I felt good -- think about moving there. For instance, a couple of people in Seattle found that even though the city was really problematic for them, they felt better when they moved to Bainbridge Island.

    This might not get people to the sort of remission that Crawford describes or that other people have experienced, but it still might help them to make some progress, or to start to benefit from other treatments, or to prevent a decline.

    Best, Lisa
     

See more popular forum discussions.

Share This Page