Lady Mar writes to Prof Wessely

[DaiWelsh]

Let me suggest to you one advocacy idea that takes considerably less effort than posting in this thread:

Valid point and I do try to do what "armchair advocating" I can by way of supporting votes, petitions etc. I guess I was guilty of excluding that from the term advocacy, thinking more of the more visible versions that some people do so well and I fail abysmally at

ETA: the aviva vote is loaded in another tab as we speak, from an earlier thread, will be sure to do it now

 

[Merry]

Valid point and I do try to do what "armchair advocating" I can by way of supporting votes, petitions etc. I guess I was guilty of excluding that from the term advocacy, thinking more of the more visible versions that some people do so well and I fail abysmally at

ETA: the aviva vote is loaded in another tab as we speak, from an earlier thread, will be sure to do it now

Oh, thank you so much, DaiWelsh! Stiff competition in the Aviva contest. Spread the word about the contest if you are able.

 

[Enid]

Just had a news flash from Dr Myhill's team - this letter from Lady Mar has to be one of the most revealing in the decades fight against psychological interventions in the UK where they never belonged.

 

[natasa778]

Firestormm, have you voted today?

very interesting question Merry !

 

[Firestormm]

very interesting question Merry !

None of your business Natasa. You know it smacks of blackmail and is distasteful to me. But yes. Thank you Merry.

 

[Merry]

But yes. Thank you Merry.

Thank you, Firestorrm! You made my day.

 

[urbantravels]

I know I've said this before, but it bears repeating: the common ground of advocacy is that we want more and better medical research; better and more humane medical treatment; fair access to benefits that are granted to people with equivalent levels of disability; and a better general understanding of the seriousness of our disease among the general public.

When it turns into attacking people instead of their ideas, statements, policies, etc., then it just gets tacky. Ad hominem attacks do not persuade people who are genuinely uninformed or undecided. They amount to "preaching to the choir".

We could have a whole conversation about the "psychosocial model" of ME/CFS without even mentioning Simon Wessely's name - or any of the other "villains" of the past. Forget personalities - how good is the science? What kind of evidence would you need to assemble to support a theory that ME/CFS is caused (or perpetuated) by the mind? What kind of evidence would argue against the theory?

It's hard to get people up to the point of even asking those questions in an objective way. If all outsiders tend to see is ad hominem slapfests, then they will assume this is not a question that even *can* be decided on the merits of the evidence. We need to move the conversation out of "he said, she said" territory whenever possible.

 

[taniaaust1]

[

Tania. Please don't ever assume that they aren't out there doing their bit. Including me for that matter. If anyone - including me - 'advocates' in public and on the behalf of others with ME, they and I cannot expect not to be criticised!

That's good to hear u do whatever u do. I still dont understands to whys of it all eg Why do people feel a need to criticise others just cause they are doing things differently to themselves? Its like saying..there is only one way to be doing this and everyone needs to be doing such as me. I personally think a person should be able to post their advocacy efforts and "expect NOT to be criticised"by the community. I think more advocacy would be going on if the attitude of "expect to be criticised if you do advocacy" wasnt prevailing in our communities. Honestly cant you see this is quite negative?

Attitudes like this affect other things eg at this point even if we found famous people to advocate for us as I know some have been trying hard to do eg movie star or whatever.. I dont think they'd last long at all due to the critizism they'd be bound to get by the very own community they support, due to this attack our advocates attitude currently out there.. (fortunately the countess of Mar knows her ME stuff). We have a heck of a long way to go before we can be like other illnesses with good advocacy going on with well known new others to help. Its a very sad situation.

I havent heard of any other illness advocacy being attacked by what it represents nearly every time advocacy is done.. why is it happening with us? More fear among our community??? but then the AIDS communities would of had a lot of fear and they successful advocated in some ways far more forceably then we are and as far as I know they didnt attack their advocates.

There is a clear perception among some especially on the internet - that every single thing they do and say - is great or fantastic and we should all run along like lemmings and jump off that same cliff.

But that is what Im talking about.. why are people critizing others advocacy efforts? Your quote above is implyin that we shouldnt all be doing the same thing but on the other hand you critize things who do differently to u.

If Lady Mar or anyone else persist in driving a wedge between who are perceived to be researchers and clinicians working on behalf of sick people (whether or not you or I 'like' the individuals concerned or what they pursue) the perception will be:

'Don't touch ME. It's not worth it.'

Scientists ALREADY.. lots of them.. already think that and would never do ME research. It isnt due to Lady Mar.

How long has Wessely been hounded? 20, 30 years?!

He hasnt been hounded well long enough. Before internet become common (less then 20 years).. he wasnt getting hounding at all, those who spoke up, were very rarely heard. The ME/CFS communities as time goes on and everyone wised up, I think are more focused on what he'd call hounding and now its obviously too in his face. He knows its close to all he's done becoming too generally public (he's all this other bad media directed towards us)

My attitude now is to look at this change in research direction from the MRC

but what CFS criterias are being used? etc Is it going to be good research? They only changed cause they were FORCED too due to pressure of the ME/CFS community. It doesnt mean they've changed how they "think" about ME/CFS.

To look at all the 'biomedical' science now being published around the world,

I dont think the amount of biomedical research in my own country has changed.. we (in Australia) didnt have much in the way of psych studies happening before and probably have a similar amount of biomedical research now. Im glad thou that the research has shifted where you are so yes that is a bit of a step forward (thou I worry that much of the research will be fairly useless unless good CFS criterias are being used).

 

[Firestormm]

I havent heard of any other illness advocacy being attacked by what it represents nearly every time advocacy is done.. why is it happening with us? More fear among our community??? but then the AIDS communities would of had a lot of fear and they successful advocated in some ways far more forceably then we are and as far as I know they didnt attack their advocates.

Morning Tania,

I'm rather battered and bruised this morning - figuratively speaking. It's how I feel after a rough night. So forgive me for not engaging here in full.

I am interested though in your reference to the "AIDS communities". Why is it that people feel our condition can and should be compared - with some frequency - to AIDS or to the AIDS patients' struggle for recognition? Why AIDS and not other conditions? What is it about AIDS that people feel is comparable to ME or ME 'advocacy'?

It crops up with some regularity. I ask out of interest and nothing more. I am not criticising your use of it. Thanks

 

[taniaaust1]

Morning Tania,

I'm rather battered and bruised this morning - figuratively speaking. It's how I feel after a rough night. So forgive me for not engaging here in full.

I am interested though in your reference to the "AIDS communities". Why is it that people feel our condition can and should be compared - with some frequency - to AIDS or to the AIDS patients' struggle for recognition? Why AIDS and not other conditions? What is it about AIDS that people feel is comparable to ME or ME 'advocacy'?

It crops up with some regularity. I ask out of interest and nothing more. I am not criticising your use of it. Thanks

I hope u soon feel better some.

I only referenced AIDS in my post as I couldnt think of any other illness at the time in which patients may have a lot of fear involved. Those with AIDS would have more fear then any other illnesses I could think of eg Fear of death and on top of that of cause they also often have the big fear of others knowing they have got AIDS due to the connection with gays and drug users and this diagnoses could possibly expose areas of their life they didnt want exposed. Those with something like cancer or heart disease.. which have only fear death as the worst thing.

Anyway.. it was only in trying to think of a medical illness in which a lot of fear would be involved in which I came up with AIDS. Our community in many ways isnt anywhere like AIDS when comparing as of cause most AIDS people are far more able. Thou maybe we do have far more fear in our communities then "most" other diseases do... fear of those who dont believe we are sick, fear of job loss for those who still can work a bit etc etc

 

[Firestormm]

AS I said in the message, Please don't worry and thank you for your concern. I think this AIDS useage is worth pursuing in a debate at some point and will perhaps return to it later when I'm more 'with it'

 

[alex3619]

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?

 

[urbantravels]

AIDS activism grew out of a situation not very similar to ours. The gay community already had pre-existing political networks (thanks to Harvey Milk and others of his time) and were highly concentrated in urban areas where turning up to protests was easier. Also, there were healthy people making common cause with sick people, because the disease was a threat to the entire community. I don't know this for sure, but I don't *think* AIDS activism was complicated by a million different theories of the disease, squabbling over what its name should be, etc.

We, on the other hand, are geographically dispersed (except for some outbreak clusters) without pre-existing ties to one another or any community identity. "Mostly middle-aged women" doesn't make for a cohesive group - or a very politically powerful one. And, of course, the basic problem that we are very limited in our ability to show up for protests, lobby our legislators, etc - the few people that can do it should be encrusted with medals for what they sacrifice to do it.

Our ability to communicate via the Internet is a very sharp double-edged sword. We can share ideas and organize (virtual) group actions and find support and information, which are all wonderful things. But Internet communication also facilitates a lot of squabbling, because we don't have the other elements of human contact to help us humanize and understand one another and minimize or work out conflicts. And all our internecine battles are out there on the Internet for the general public to see. We look like the People's Front of Judea arguing with the Judean People's Front. We get very worked up about whether activity X or statement Y is sending "the right message", not making us look worse than we already do, and this comes out in flame wars rather than a consensus hashed out on the basis of our highest priorities.

I think we like to aspire to the successes of AIDS activism, but the comparisons are necessarily limited. Yes, there are times I would like to be shouting in the street and throwing things because I am SO ANGRY and don't even have the energy to express that anger. The small incremental changes, the written statements, the testimonies, the Internet fundraising contests, all seem like frustratingly small and slow steps.

 

[waiting]

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

 

[heapsreal]

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

email address appeared to fail saying, Delivery to the following recipients failed.

 

[taniaaust1]

, on the other hand, are geographically dispersed (except for some outbreak clusters) without pre-existing ties to one another or any community identity. "Mostly middle-aged women" doesn't make for a cohesive group - or a very politically powerful one.

Thanks. Thou I have thought about the differences between us and AIDS before, I'd never thought before about those two different points. Yes AIDS would of been mostly men sick fighting for change. I think men in general get it easier then women and "women's illnesses". Some just think we are a mob of whining women.

The closest illness we are probably similar to is MS (thou that group probably in "general" are more abled). The MS advocacy at least in my country, they manage to do a decent job and everyone has heard of the MS society or seen their info.

 

[beaker]

AIDS activism grew out of a situation not very similar to ours. The gay community already had pre-existing political networks (thanks to Harvey Milk and others of his time) and were highly concentrated in urban areas where turning up to protests was easier. Also, there were healthy people making common cause with sick people, because the disease was a threat to the entire community. I don't know this for sure, but I don't *think* AIDS activism was complicated by a million different theories of the disease, squabbling over what its name should be, etc.

We, on the other hand, are geographically dispersed (except for some outbreak clusters) without pre-existing ties to one another or any community identity. "Mostly middle-aged women" doesn't make for a cohesive group - or a very politically powerful one. And, of course, the basic problem that we are very limited in our ability to show up for protests, lobby our legislators, etc - the few people that can do it should be encrusted with medals for what they sacrifice to do it.

For me the references to AIDS seems to be used as the major cluster breakouts in the 80s came in the time of AIDS
(myself included in that group). By "the time of AIDS" I mean the disease 's emergence in the world in vast numbers and in the media and conscienciousness of society. Both illnesses came about in overlapping time frames and with many similarities.
I got very sick very fast, many thought I had AIDS,( I had friends avoid me b/c of fear -- back when there was much misunderstanding of how AIDS was transmitted.) every study I was in required we be tested for AIDS. There were ( and are) many immune similarities. Many docs in the early days tried to connect the dots.

And the early groups tried to join forces with the AIDS groups for help and support and advocacy.
MS, RA and the other illnesses models mentioned didn't come in cluster outbreaks,with seemingly sudden emergence in the world. Where whole towns/schools/communities got sick . AIDS did, obviously, by hitting a the gay community in high numbers.
ME/CFS had the marks of contagion or infectiousness, the other illnesses you mention , not so much.
I got sick at a time when a lot of people where suddenly getting this odd devastating disease, and where it also seemed clear that the powers that be didn't want another AIDS , and swept us under a carpet made up of a silly and demeaning name. The way AIDS patients were treated originally and then embraced by society, is at least for me, a hope of how it might someday be accepted and yes. all those red ribbons, be trendy even.
When I first got sick, a fellow PWC said, "Our best hope is if a lot more people get sick and if someone very well known gets sick" She didn't wish this on anyone, just to clarify.
But it is so stigmatized that anyone with clout who may be sick or may have a family member ill, keeps a low profile.
Yes, many have tried ( and I give them gratitude) , but they just weren't Rock Hudson. and they didn't have Elizabeth Taylor as a friend, kwim?

well I think my train of thought got a bit off track. and here I go..... always apologizing for my brain that used to work so much better......

 

[beaker]

Our ability to communicate via the Internet is a very sharp double-edged sword. We can share ideas and organize (virtual) group actions and find support and information, which are all wonderful things. But Internet communication also facilitates a lot of squabbling, because we don't have the other elements of human contact to help us humanize and understand one another and minimize or work out conflicts. And all our internecine battles are out there on the Internet for the general public to see. We look like the People's Front of Judea arguing with the Judean People's Front. We get very worked up about whether activity X or statement Y is sending "the right message", not making us look worse than we already do, and this comes out in flame wars rather than a consensus hashed out on the basis of our highest priorities.

I think we like to aspire to the successes of AIDS activism, but the comparisons are necessarily limited. Yes, there are times I would like to be shouting in the street and throwing things because I am SO ANGRY and don't even have the energy to express that anger. The small incremental changes, the written statements, the testimonies, the Internet fundraising contests, all seem like frustratingly small and slow steps.

[/QUOTE]

I was talking to a long time PWC friend... and we noted how before the internet, the CFIDS (preferred name back in the day) community seemed smaller and tighter and friendlier.
You connected up by phone. A friend of a friend kinda thing. or support groups. or yes, once upon a time, when the CFIDS Assoc was printing out their first couple years of newsletters, authors of articles would put their contact info and you could connect up that way too.
Phone trees through groups.
and of course, if you were a patient of Cheney, Bell or Peterson, you often connected up through studies. Agreeing to share your contact information to talk to someone else trying the same experimental treatment.
There were real names, and voices.
Now, the internet allows us to hide (guilty here ) behind pseudonyms. And that anonymity has it's good and bad.
( protection to speak w/ o scrutiny of disability cops for ex as a good, and privacy for those who may be well enough to work and don't want those in their workplace to hold it against them. Or talk about family issues and not worry about said family finding out and misunderstanding our need to vent. That sort of thing)
But a very big downside, imho, it seems to give a license to speak ones mind, without repercussions. ETA: maybe responsibility for ones words is a better than repercussions.
Without the visceral connections, we seem to be prone to be more hurtful. It's not "joe" who I have spoken too and know, it is "beaker" who is detached somewhat from being "real"
It seems that is one major reason many pick apart advocates or researchers or doctors and others who are trying to help.
There is more room for misunderstanding with typed word and no voice inflection.-- I've seen many times how that has caused problems with posts and posters.
I don' t know what the solution is. In this corporate data mining world, no one wants to give up what little privacy there may be left.
Maybe we ( and that means me too) need to remind ourselves that it's not a moniker it's a person.
For those who boldly use their real names, I salute you.
who knows, maybe someday I will be brave enough to join your ranks.

 

[waiting]

email address appeared to fail saying, Delivery to the following recipients failed.

I used that email address and got a reply back today! Maybe did you accidentally include the period after the email address?

 

[heapsreal]

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.