• 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.

    To become a member, simply click the Register button at the top right.

Countess of Mar becomes a Patron of The MEA

V

Valentijn

Senior Member
Messages
15,786
Seanko said:
Slightly concerned that she seems to pursue a few personal vendettas such as the one below which can distract from the objectives which must be increased funding & recognition for the illness.
Click to expand...
I'm not sure why you think it's a personal vendetta. She does a great deal of advocacy on behalf of ME patients, including that series of open letters to Simon Wessely.
 
A.B.

A.B.

Senior Member
Messages
3,780
I think it's good to have advocates that are not afraid to say what needs to be said. The health care system and medical community has failed patients. We shouldn't put on a good face on the matter. The risk with being nice and diplomatic is that it downplays the situation as something like minor annoyance, rather than the human tragedy and catastrophe it is.
 
Mark

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Seanko said:
I am aware that she does a lot of good work on behalf of the ME/CFS community in the UK.

Slightly concerned that she seems to pursue a few personal vendettas such as the one below which can distract from the objectives which must be increased funding & recognition for the illness.

http://www.investinme.org/Article-395a Letter from Lady Mar to SWessel.htm
Click to expand...
Those objectives are indeed the most important ones, but sadly, with ME there is more that needs to be said. As far as the Countess of Mar's campaigning is concerned, it might all seem like a rant to you Seanko, but are you aware that regarding the most substantive and contentious issue that the Countess has been campaigning on for many years - and the substantive issue that she refers to in that letter, relating to a meeting with Wessely in 1998 - it has recently been revealed that government officials knew of the risks relating to organophosphates in the 1980s and 1990s but did not reveal what they knew publicly?

The following news story is clear evidence that the Countess was absolutely right in what she has been campaigning on, and that officials knew she was right when she was campaigning on this in the 1980s and 1990s, but covered up that information. Campaigning for increased funding and recognition will not solve the problem on its own if known causes of the illness are being covered up. In those circumstances, it becomes essential to also address the political dimension in order to make progress.

http://www.theguardian.com/environm...knew-of-farm-poisoning-risk-but-failed-to-act
 
Seanko

Seanko

Senior Member
Messages
119
Location
Swindon, UK
@Mark

Thanks for your reply and the information. To represent 1000s of people requires a calm head and some tact & diplomacy.

The political world of medicine involves building influence and sometimes dealing with people you do not like or those who have different beliefs.

Making enemies needlessly is self destructive.

If the Countess can make things less personal, she has more chance of success.
 
A.B.

A.B.

Senior Member
Messages
3,780
Seanko said:
@Mark

Thanks for your reply and the information. To represent 1000s of people requires a calm head and some tact & diplomacy.

The political world of medicine involves building influence and sometimes dealing with people you do not like or those who have different beliefs.

Making enemies needlessly is self destructive.

If the Countess can make things less personal, she has more chance of success.
Click to expand...

And sometimes conflicting views are simply opposed, with no middle ground or agreement being possible. That's okay for me. I do not need to please everyone.

AIDS is an excellent counter example to your point of view by the way.
 
Last edited:
A

Aurator

Senior Member
Messages
625
Seanko said:
The political world of medicine involves building influence and sometimes dealing with people you do not like or those who have different beliefs.
Click to expand...
I suspect the Countess of Mar knows better than most of us how the political world works, and especially the political world of medicine; given her many years of experience I think it's unrealistic to suggest she doesn't.
Seanko said:
Making enemies needlessly is self destructive.
Click to expand...
Making enemies with people is sometimes the only rational way of proceeding, especially if the people concerned have already given ample evidence of their own hostility to the cause you represent. Here again, the Countess of Mar seems to have a very clear grasp of the position she has adopted. I quote from the letter you linked to:
"If that means offering honest criticism of individuals who, I believe, are hurting others who are not in a position to speak for themselves I am prepared to take any brickbats that come my way."

Seanko said:
If the Countess can make things less personal, she has more chance of success.
Click to expand...
The fact that science still understands so little about ME and the fact that the treatment patients receive is so poor is in no small part a consequence of the activities of certain key individuals who, for whatever reason, have been trying to sweep ME under the carpet for decades. Given the ongoing influence of these key individuals, it's only to be expected that things will get personal from time to time.
 
You must log in or register to reply here.