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Lady Mar writes to Prof Wessely

Discussion in 'General ME/CFS News' started by Peter Kemp, Dec 4, 2012.

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  1. beaker

    beaker CFS/ME 1986

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    Yes, I notice that people are up for crisis care --- Let's jump in to help for AIDS or cancer and fight the good fight and there will be a win or loss. ( or at least it used to be that way. now thank goodness there is a lot of surviving on meds long term w/ both. esp. AIDS -- in thie US at least) Chronic puts things in a grey area. Most folks like things more clear cut. me too.

    When I got sick, a friend of a friend was a writer in H.wood. they said "oh you have screenwriters disease"
    it really went through that community in LA at the time. I was told that those in front of the camera didn't speak up b/c they wouldn't be able to get the insurance to needed to work. ( films are insured so the investment is protected. health of the players is key in that. )

    glad you are able to work w/ o being hassled.
    sad that society makes it so you have to hide it.
    heapsreal and Sasha like this.
  2. beaker

    beaker CFS/ME 1986

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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    wow, i finally worked out what i did wrong trying to send a thank u email to lady marr, i only just sent it off and got a reply back in minutes. She is basically suprised by the support she has recieved and it appears shes not going to back down from SW's bullying tactics.
    She seems like an intellegent and strong woman, glad she's on our side.
    There has been a few high profile people in the past who have talked the talk about standing up for cfs/me but she seems like she's going to walk the walk, i hope so. Shes got my support.

    cheers!!
    allyb, alex3619, beaker and 2 others like this.
  4. lnester7

    lnester7 Seven

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    I don't know how it was done, but somebody set up a group card before. As a community maybe we can do that to thank her.
    WillowJ, allyb, alex3619 and 2 others like this.
  5. Merry

    Merry Senior Member

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    Yesterday I thanked Lady Mar in a winter holiday card and put it in the mail.

    Countess of Mar
    House of Lords
    London
    SW1A 0PW
    UNITED KINGDOM

    The "UNITED KINGDOM" is how the US postal system wants mail marked. Postage for a card from the US to UK is $1.05.
    Kati, allyb, beaker and 3 others like this.
  6. snowathlete

    snowathlete

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    I usually go with MS, most peple agree it is a terrible illness, but one with unknown cause, like ME in many respects. Also I seem to remember the chief medical officer (uk) saying ME should be treated similarly to it, back in 2002.
    RA is another i sometimes mention because i went to see a consultant about my leg a year or so ago, unrelated to ME. He asked why i hadnt been back to see him, as i had seen him with trouble with my leg some years ago, and i told him i now had ME. He surprised me by saying that he was aware of the illness and had looked at it as it had similariies to RA patients he saw.
  7. alex3619

    alex3619 Senior Member

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    snowathlete, ME, MS and RA all share the 37 kilodalton RNase L. I consider them to be potentially in the same disease family. Where ME is different is the other two do not have elevated elastase.
    Enid likes this.
  8. Enid

    Enid Senior Member

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    Splitting things off does not seem too helpful to me - the damage (and pathologies found are so similar but that is the bod's response) - now why.We are in the realm of things neurological, immunological, virological - even cancers and many diseases have viral origins apparently - there is our problem undiagnosed all round.
  9. beaker

    beaker CFS/ME 1986

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    Question ( Perhaps the UKers would be more likely to know)
    She is the Countess of Mar, but I addressed her per what was in this thread , as "Lady Mar"
    what is the correct way to address her ? I'm sure she realized I am a bumbling American. ;-)
    But would like to call her in the appropriate way.

    Thanks !
    Enid likes this.
  10. Merry

    Merry Senior Member

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    Hello, beaker. I was instructed by an Englishman to address the envelope to "Countess of Mar" and to use "Dear Lady Mar" as the salutation in the note.
    beaker and Enid like this.
  11. Purple

    Purple Bundle of purpliness

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    How does ME compare to Lupus? I have come across opinions from medical people that ME reminds them of lupus because of the sheer number of everchanging symptoms we experience.
  12. Enid

    Enid Senior Member

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    Definately not bumbling beaker (we have problems here too) - I wrote 10 years ago to thank her and received a delighful letter (House of Lords - your Senate) in all efforts to remove real illness from the mumbo jumbos about us. Think I can say however you address - it's about misrepresentaion by psychos of real illnesses alive and well in this United Kingdom.
    beaker likes this.
  13. barbc56

    barbc56 Senior Member

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    Very interesting Purple. I have a friend whose daughter was just diagnosed with Lupus and some of the symptoms such as fatigue, achiness do indeed seem similar. I am not that familiar with lupus but my understanding is that it's an autoimmune disease. Of course overlapping symptoms may or may not mean anything, but still food for thought.

    Barb C:>)
  14. beaker

    beaker CFS/ME 1986

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    Thanks Merry ! I guess I did it correctly after all : )
    Merry likes this.
  15. Firestormm

    Firestormm Senior Member

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    I don't suppose anyone here managed to obtain a paper copy of the Independent on Sunday, this last weekend? Only there was supposed to be a correction published in it in relation to the letter that appeared. Let me know? Thanks :)
  16. alex3619

    alex3619 Senior Member

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    Hi Purple, aside from superficialities I will be honest and say I have never gone into depth on the comparison with lupus. I expect there might be things to learn there. Maybe someone else can comment? Bye, Alex
  17. urbantravels

    urbantravels disjecta membra

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    Looks as though lupus has a LOT of subtypes:

    http://en.wikipedia.org/wiki/Lupus_erythematosus

    I think "systemic lupus ertythematosus" is the one we commonly think of when we think "lupus." It has a lot of signs and symptoms that can be confused with other diseases. Unlike with us, there are a lot of objectively observable signs, and the disease mechanisms don't seem to line up with any of the credible hypotheses about ME/CFS, so it doesn't seem like they are closely related. There are what, eighty or ninety different autoimmune diseases?

    There is definitely fatigue in lupus, like there is in a million other diseases, and it can be chronic and debilitating. The woman who invented the term "Spoonie" has lupus.
    taniaaust1 and Purple like this.
  18. Firestormm

    Firestormm Senior Member

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    No worries. Supposed correction did not appear. Danke.
  19. Adamskitutu

    Adamskitutu *****

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    What correction was that?
  20. Firestormm

    Firestormm Senior Member

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    Well Adam, you will recall that Lady Mar felt slighted being associated by the Letter that was published with those who have 'harassed' Wessely et al? And that White apologised and she accepted the apology - saying I believe from memory that the letter had been edited by the Independent prior to publication? The correction some were expecting would have addressed this issue. Though what form it might have taken - whether it would have seen the Letter published in full for example - I do not know because it doesn't appear to have happened.
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