Lady Mar writes to Prof Wessely

[beaker]

I think what also helped AIDS is that people died sooner and their suffering ended. people with cfs/me dont die soon enough and their suffering is ongoing. And no diagnostic test/marker

Also the stigma of being lazy and not dieing from it is why celebs with cfs/me dont put their hand up and advocate cfs/me. Also harms their job prospects i suppose, a celebs work life 'might' be easier to manage then a non celeb as they earn the big bucks to get better treatment as well as their working not being 24/7 365 days the yr, they can push themselves for several months and rest up the rest of the year??

I can understand them not putting their hand up in a way, i know if i mentioned i had this illness to my bosses then they would send me for a medical to their doc and either have me written up as depressed or give me a poultry pay out and get rid of me. Im glad i have improved and havent had to play the cfs/me card to them, but it has come close when they have questioned my sick leave etc.

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.

 

[beaker]

We can show our support for Lady Mar by emailing our "thank you's" to her at marm@parliament.uk. She is a strong, courageous person, but it would be nice to show her how many people -- worldwide -- support her.

Here's her official Parliament page: http://www.parliament.uk/biographies/lords/margaret-of-mar/27017

I wrote and she sent me a lovely reply : )

 

[heapsreal]

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!!

 

[Seven7]

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.

 

[Merry]

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.

 

[snowathlete]

I am not convinced we should be focussing too heavily on AIDS as a model. I am wondering if we should be looking at other so-called psychogenic disorders that were then proved to be physical. I have already cited peptic ulcers, several have written about MS in various threads, what about other disorders? Does anyone know much about how the medical position shifted from psychogenic to physical in diabetes, rheumatoid arthritis etc. I think, in part, this all happened when there were biomarkers that were generally recognized. Does anyone know of any good papers on this issue?

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.

 

[alex3619]

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]

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.

 

[beaker]

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.

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 !

 

[Merry]

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 !

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.

 

[Purple]

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.

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.

 

[Enid]

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.

 

[barbc56]

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.

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:>)

 

[beaker]

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.

Thanks Merry ! I guess I did it correctly after all : )

 

[Firestormm]

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

 

[alex3619]

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.

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

 

[urbantravels]

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.

 

[Firestormm]

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

No worries. Supposed correction did not appear. Danke.

 

[Adamskitutu]

No worries. Supposed correction did not appear. Danke.

What correction was that?

 

[Firestormm]

What correction was that?

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.