Hello again, My Friends

Discussion in 'Fibromyalgia Main Forum' started by findmind, Nov 16, 2008.

  1. findmind

    findmind New Member

    I may be kicked off withing 30 seconds, as my webtv does not like this site at all, at all!!! I can go to another health board (clue there) and have no trouble at all; this one is too busy and all I see are ads, which is fine, but it loads up my little webtv "brain" and I can't be on for long, or read very many posts.

    I just wanted to say hi, and send love and huggies to all who have been my friends over the past few years; I still love you, and miss you very much.

    I see we are now promoting therapies for every modern disease known to man, from A-Z, LOL...that's ok, maybe someone will be helped by it all, right?

    Was astonished at Kim Cleary's rage at the CDC; did you see it? To me? A bit (like 10 years) too late. The CDC is not ever going to back down.

    I saw my post where I said, Goodbye, my friends, on 10-26, and saw that it had 176 (!!!) replies; however, I could only read one...were there really that many? I cannot believe it...

    Anyhow, I'm dealing more with my myasthenia gravis than anything right now, but am doing ok with the mestinon...only 2 hrs of activity, tho', and I'm almost ready to go to the ER, it gets so bad. So, I'm reading a lot more: y'all, readers out there, of fiction, I just read "Blasphemy", can't remember authors (actually, don't have the brain to pay attention, LOL), but ya gotta read it. Amazing story of supercomputer and maybe the wave of the future for some interested in science.
    Edge of the seat suspense, too.

    If you reply, I can't promise I'll see it, but just in case, thank you! I miss you, too...

    Huggies galore,
  2. tansy

    tansy New Member

    Hi Findmind

    I could not access this board much for different reasons and find some of it's features frustrating.

    we are aware of problems with the CDC in the UK since it has a knock on effect in other countries. Things are just as bad here but hopefully the judicial reviews will help us in our endeavours to create a turn around. Having seen the evidence that's been prepared for one of them I am optimistic about the outcome.

    Sorry the MG only allows for two hours of activity; I am sure many here will emphathise with that. It's another difficult illness and I hope your doctors are able to control it better soon.

    tc, Tansy
  3. momof27

    momof27 New Member

  4. CanBrit

    CanBrit Member

    Good to hear from you again and glad to see that you're still handing in there. Maybe I'll find you on that other site....nudge nudge wink wink.

    All the best,

  5. jasminetee

    jasminetee Member

    It's good to see you here. Bummer that this site is causing you so many problems. I lol at this: "Was astonished at Kim Cleary's rage at the CDC; did you see it? To me? A bit (like 10 years) too late." I agree with you.

    Take Care and hope you start feeling better.


  6. findmind

    findmind New Member

    So wonderful to see your reply(mean that literally, LOL)!

    It is amazing that the CDC is now being criticized by the very people who helped create this dire situation: Kim Cleary and Dr. Suzanne Vernon (they are "colleagues" now). They have actually been co-conspirators, but that's beside the point.

    We need a class action lawsuit here in the USA that will fire the incompetent and criminal elements in the CDC and NIH that have fosted this illegal act upon patients: the purposeful and criminal intent to defraud patients of the right to appropriate health care for a chronic, debilitating condition. To think that OUR hard-earned tax dollars actually paid for them to do this is galling.

    Anyhow, thanks for writing, and I hope to be able to come back occasionally and sneak in time here before the brain of my webtv goes kaput!!

    I think of you, and all you UK patients often, and do pray your legislation will stop the nonsense very quickly; we need the same option to happen here, right now.

    I hope our next administration will be more open to our plight; keep your fingers crossed!

    Hugs and love galore,
  7. findmind

    findmind New Member

    If you find the site we alluded to, look at the interesting post from curiousk to cgranulomatous; quite the answers from the idiot Cgran, so typical, I think it's in the infectious diseases area.

    Thanks for replying; hope I can stay on long enough to say so to all who did..

    Best wishes to you and all who wrote....


  8. tansy

    tansy New Member

    were ignored; such a shame it has taken this long for the penny to drop. Since the CDC were keen to follow in the footsteps of the UK and Holland this is a welcome expose.

    Tax payers money was given to the psychobabblers and biomedical researchers applications for research funding turned down here in the UK.

    Yes a class action lawsuit is needed; the more who become involved the better. Genuine specialists and researchers would no doubt get involved since they're just as frustrated.

    Margaret Williams has posted the documents that will be used in the Judicial review; they can be read at

    Despite all you have had to cope with your fighting spirit and human touch has earned you my admiration and respect.

    love and hugs from across the big pond, Tansy
    [This Message was Edited on 11/17/2008]
  9. doxygirl

    doxygirl New Member

    Hi...it's me Doxy!:)

    I did not realize that you have myastenia gravits!

    My sister has that..she was left misdiagnosed for close to 20 years!!!!!!! Her story would leave you speechless if you are interested please let me know and I will take the time to tell you her "sad but true story"

    I hope your feeling better FM!

  10. karinaxx

    karinaxx New Member

    so nice to find you here again. I just login from time to time, hoping to see some known names and interesting articles.
    So really happy to see you here.
    I did not know your suffering from MG, always thought i might have it too, when i had the severe muscle weakness.
    Since i tested with Dr.Meirleir positive for fructose malabsorbtion and avoid fruit sugar completely i do not have this extreem muscles weakness anymore.

    I am also not happy with the new board. As you said well, seems to many adds and the whole rap gone very comercial and i am especially upset about the ME/CFS information and their choice of words like "stressors". One would think, especially here, the information would be correct and more sensitivity towards us and the choice of words, so long used in the wrong context.

    Well, maybe its time to move on.

    take care and hope you will improve

    [This Message was Edited on 11/18/2008]
  11. findmind

    findmind New Member

    So good to see you!!! I'm sorry about your sister. My eyes and facial and talking and swallowing muscles are affected. No others (yet!).

    Tell me about your sister, the poor thing. Drs. are so stupid nowadays; where did all the good diagnosticians go?

    My FM gives me very little problems, actually; the DDD in neck can make the neck and shoulders flare up, but the rest of my body seems to have kicked it somehow, don't ask me how.

    Will come on when my webtv computer brain allows, and look for you, ok?

    Mucho huggies,