• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. E

    Partial paralysis with ME only very temporary?

    Those of you who experience "paralysis": have you ever had your reflexes tested during these episodes and what was the outcome ? Were you told (by your doctor) that you had in fact (transient) paralysis, or is this just your way of describing your symptoms (such as "dead battery" = "paralysis")...
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    Dr. Cheney Warns Against Long-term Use of SSRIs and Stimulants

    The video on the first page of this thread "Marketing of Madness" is a Scientology-piece. Didn't anyone notice ??????
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    How to "sound proof" bedroom windows ??

    With regards to Zoe's post (I feel for you...) and the question of expenses I would like to add that I got my material from a company that does sound-proofing projects for large industrial firms. They had some leftovers from their last assignment that they sold to me for half price. So it is...
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    Please vote for IiME as cause of the month

    "...can non UKers vote? And "1,2, 3--how do we do this?" I tried to work this out, too. As per the terms you need to be a permanent resident of the UK in order to join: http://www.easyfundraising.org.uk/terms/ You have to register with your name, email-address and a password. The "click...
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    looking for online sources for petite XL clothes - esp tees & sweaters

    How about ebay
  6. E

    How to "sound proof" bedroom windows ??

    Thank you :-)
  7. E

    Brain Problems found in GWS

    abstract at: http://www.ncbi.nlm.nih.gov/pubmed/21914840
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    How to "sound proof" bedroom windows ??

    SUCCESS I had figured that it would make more sense to tackle the sound-problem outside (before the sound even hit the window - see previous posts), I have an outside sill - which made things easy and I liked the idea of having all that stuff outside from an aesthetic point of view. There was...
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    New, Permanent Facebook Group for Online Contests (Fundraising)! - Info in Post #1

    Hi Willow "I think there are still some misunderstandings" Yes, and I don't know how to re-re-re-phrase what I am trying to say in order to make myself understood. "Eric is referring to the posts on this Phoenix Rising thread". So am I. He said he did not understand what the difference...
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    New, Permanent Facebook Group for Online Contests (Fundraising)! - Info in Post #1

    Eric: "I don't understand the logic behind setting up an email list" You answer this yourself: "read through all the posts".
  11. E

    New, Permanent Facebook Group for Online Contests (Fundraising)! - Info in Post #1

    No idea what a yahoo-group is, but why not just work with an ordinary email address. Something like "MEresearchfunds@gmail.com" - I just made that up, but I would not include "CFS" in whatever that name turns out to be and "research" makes the cause sound somewhat legitimate and important...
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    New, Permanent Facebook Group for Online Contests (Fundraising)! - Info in Post #1

    YES YES YES, Willow, you got it (jumping up and down, clapping hands - I can't find an icon for that) :-))
  13. E

    New, Permanent Facebook Group for Online Contests (Fundraising)! - Info in Post #1

    This is not about me or ME patients but about outsiders. We are asking others for favors. Therefore we should make it as easy as possible for them to cast votes. The 70 or so facebook-group-members aren't gonna cut it. 500 or so email-members already sound better and I am sure we could get...
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    New, Permanent Facebook Group for Online Contests (Fundraising)! - Info in Post #1

    Hi Eric (and Willow), I think the most important point is to reach more people. I am not talking patients. They have time and can fiddle around with facebook. I am talking friends, relatives and acquaintances. Busy career people. They do not waste time checking up on facebook, even if they do...
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    $$$ for WPI vote daily now in Vivint Round 2!

    Posted the following in the facebook-group-thread at: http://forums.phoenixrising.me/showthread.php?13263-New-Permanent-Facebook-Group-for-Online-Contests-%28Fundraising%29!-Info-in-Post-1&p=203750#post203750 "Would there be any chance of an email group (unrelated to facebook) for notifications...
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    New, Permanent Facebook Group for Online Contests (Fundraising)! - Info in Post #1

    Would there be any chance of an email group (unrelated to facebook) for notifications of contests ? I think that would be great for those who don't want to join the facebook-group but would still want to help out. There are people out there who find facebook confusing, a time-waster and annoying...
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    $$$ for WPI vote daily now in Vivint Round 2!

    What I don't understand is this: approx. 70.000 votes for the WPI, the contest ran for what ? 10 weeks ? That's 7000 votes per week and 1000 votes per day. So: where on earth are the supposed millions of ME sufferers ????????
  18. E

    WPI / IHYD / Suzi Oravec.

    When I tried it the red heart did come up (after about 15-20 seconds into the video), but my vote wasn't actually counted (I went back later and checked and the numbers were still the same). Shame.
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    WPI / IHYD / Suzi Oravec.

    Hi, I am wondering if people are aware of Suzi Oravec who is the artist performing at this years' WPI IHYD event FOR FREE. She actually made a "I hope you dance" video !!! Check it out here - she's got talent and seems to be a lovely person: http://www.youtube.com/watch?v=stE8A421OwI (There's...
  20. E

    How to "sound proof" bedroom windows ??

    @ SickofCFS: I like your optimism "what finally worked for you", not IF anything worked for me ;-) Received my first samples and they are useless. Will post details later, as promised. Please keep fingers crossed. @ 3CFIDS@ourhouse: boy, your post made me laugh. I know it wasn't meant to...
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    Vote now on John Lewis facebook to fund Invest in ME!

    Guys, I'm hopeless with facebook. I "liked", then clicked onto "vote" and it now tells me that I am supporting IIME this month. Was that it ?? I neither got a confirmation that I "voted", nor did the % go up (which it doesn't have to with just one vote I suppose). How often am I to do this now ...
  22. E

    How to "sound proof" bedroom windows ??

    Hello, this is radio ePat with your daily news update on noise blocking at phoenixrising-FM :-) ...just in a bit of a silly mood today... @ Ocean.: Thank you for your kind words. You understand like only someone with ME can. Don't even get me started on the trash collectors !! The only...
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    How to "sound proof" bedroom windows ??

    Haha, YES !!! (Damned, I can't post pics in here), see: http://www.designbuzz.com/entry/coolest-sleeping-pods-for-some-serious-napping-job/ Or something like a cocoon, you know the type the spaceship crew sleep in in sci-fi movies. (I must be thinking "Alien")... What came to mind last...
  24. E

    How to "sound proof" bedroom windows ??

    Hi GG, thanks for those links. These are great products you found, but I doubt they would do much sound blocking just by themselves. The first one could maybe be used instead of a wooden panel in combination with other materials, but one would really need to have a look at what exactly it is. I...
  25. E

    How to "sound proof" bedroom windows ??

    Hi, thanks again for all your suggestions. Just to clarify: the windows I have are modern, new, absolutely tight, double-glazed windows. So it's not the windows that are the real problem. It's the combination of sound right in front of them and the fact that I am terribly noise sensitive and...
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    How to "sound proof" bedroom windows ??

    Adster, this is funny, I was going to ask about that / add a comment regarding this to my last reply, but then thought it was a bit too technical. It's a brick-wall. Crappy bricks, but at least not a drywall. So it's only really the sound traveling through the air / shutters / glass that's a...
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    How to "sound proof" bedroom windows ??

    Wow, thanks for the overwhelming response everyone ! Enid / Tony March: Replacing the windows is entirely out of the question. Fitting second windows is not going to work due to the style of windows. I had already looked into that before I posted my question. Light is not an issue. The...
  28. E

    How to "sound proof" bedroom windows ??

    Hi guys, just wondering what you do with regards to blocking out sounds from windows ? My neighbors are VERY deaf and fight all the time. Unfortunately, their main windows as well as the front door of their house are right across from my bedroom window and they wake me up all the time. (Yes...