New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

[L'engle]

@ScottTriGuy. I don't think it is that simple politically but I do hope we will have free access in the future in Canada. Especially since it's an already exisitng drug.

I looked up research trials for rituximab in canada and there is one for its use in lymphoma.

I'm impatient too. I hope we do not have long to wait.

 

[ScottTriGuy]

AIDS activists will tell you that they had a too long delay before the world took up their cause....

In the meantime, we do what AIDS patients did at the same stage, make the most we can of the treatments available to us -- AVs, abx, hormone supplementation, OI treatments, immune modulators, and so on. They're not cures and they're sure as heck not perfect, but they're what we have while we wait for a cure.

We are not doing what AIDS patients did. They took to the streets, the halls of politics and got in people's faces.

They did not wait.

 

[BurnA]

We are not doing what AIDS patients did. They took to the streets, the halls of politics and got in people's faces.

They did not wait.

There is a big difference between ME and AIDS. People don't have a fear of getting ME.

 

[SOC]

We are not doing what AIDS patients did. They took to the streets, the halls of politics and got in people's faces.

They did not wait.

They had healthy people helping them. We don't. Most of us are too sick to leave our homes and don't have people physically and financially supporting us, much less willing to go out and demonstrate. Don't tell me AIDS patients were out on the streets, in the halls of politics, or in people's faces by themselves. They weren't. They were dying at home. Those that managed to get out and demonstrate did it with a huge amount of physical support from family and friends, which we don't have thanks to the massive propaganda campaign against us.

And AIDS patients did have to wait for medications that didn't exist at the time. They had no more choice about it than we do. Activists (mostly not the people dying of AIDS at the time) pushed for more, faster progress on research. We are doing that too. You seem to be interested in AIDS history and advocacy. How long was it between the first public acknowldgement of AIDS and ARV therapy becoming available routinely to HIV-positive patients? Are you telling me no time passed, that no one had to wait for valuable treatments to become available? Are you telling me no AIDS patients took AVs, abx, and immune modulating treatments while ARVs were being researched because that was all they had at the time? They did what they had to do at the time. They took the medications available, as imperfect as those medications were. They waited for ARVs because there was no choice but to wait. Research takes time. It doesn't happen overnight. We are at that stage. We can't make the Norwegian Ritux research go any faster. We have to wait, like it or not.

If you are going to compare activism between these two diseases, at least do it fairly. Compare similar time periods. Don't compare the earliest years of ME activism with the late years of HIV/AIDS activism. Compare the people doing the activist work. Don't compare the capability of very sick ME patients to that of healthy friends and family. ME patients are doing amazing activist work given what we face in terms of very poor health, very little social support, and a very powerful anti-ME-patient propaganda machine.

 

[TiredSam]

They took to the streets

A lot of ME patients would love to have the energy to take the streets. A lot of their carers would love to have the time to take to the streets. Getting in people's faces is taken as proof that you are a psychosomatic militant. 25 people managed to drag themselves to James Coyne's talk in Edinburgh, within 2 days more than 4000 had watched the slides online. That's where we are, in bedrooms and online. There are some similarities to what happened with AIDS, but a lot of differences too.

 

[ScottTriGuy]

There is a big difference between ME and AIDS. People don't have a fear of getting ME.

And that's part of our 'marketing' problem.

Framing ME as a 'plague' or 'pandemic' would get their attention better:

"Cure ME before you get ME"

 

[A.B.]

AIDS patients also had to deal with misanthropic views by people who probably had a few loose screws:

The group-fantasy origins of AIDS.

Proposes a psychosocial origin of acquired immune deficiency syndrome (AIDS), which lies on the cusp between immunology, pathology, and psychology. It is argued that (a) AIDS is a typical example of epidemic hysteria, (b) the epidemic has at its core an unconscious group delusion that can be called the group fantasy of scapegoating, (c) the same fantasy complex underlies this scapegoating ritual as was found for leprosy during the Middle Ages, and (d) the proximal and distal causes of the tensions giving rise to the epidemic can be found in the group psychology of the US. A combination of unconscious group tensions brought about a subtle and sophisticated sacrificial witch hunt, in which the participants were the Moral Majority and an assortment of other conservative groups (as hunters) and the nation's drug addicts and homosexuals (as hunted). Both of these subgroups are acting out group sanctioned and group delegated roles, and these attacks have resulted in an epidemic of depression based mostly on shame. The core sign of AIDS, the reduction of cell-mediated immunity, is one of the typical vegetative signs of depression. (123 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)

http://psycnet.apa.org/psycinfo/1985-14989-001

Some of this will sound familiar to those of us who read the psychobabble on ME/CFS. An illness that blurs the boundaries between mind and body. An illness that exists because people believe it exists. Measurable abnormalities that are merely the consequence of psychological problems.

 

[ScottTriGuy]

They had healthy people helping them. We don't. Most of us are too sick to leave our homes and don't have people physically and financially supporting us, much less willing to go out and demonstrate. Don't tell me AIDS patients were out on the streets, in the halls of politics, or in people's faces by themselves. They weren't. They were dying at home. Those that managed to get out and demonstrate did it with a huge amount of physical support from family and friends, which we don't have thanks to the massive propaganda campaign against us.
....

I didn't say we were by ourselves.

I said we more militant and public...and effective in our activism.

That is self-evident.

 

[SOC]

And that's part of our 'marketing' problem.

Framing ME as a 'plague' or 'pandemic' would get their attention better:

"Cure ME before you get ME"

As if that would work. ME has been framed as a psychological illness. The general populace is not afraid they'll get ME because they know they're not so weak-minded as to develop a fear of exercise after a minor illness.

The BPS propaganda machine has done us HUGE harm, not just in what direct treatment is given to us, but in our ability to inform the public about our illness and thereby gain support and funding for appropriate research. We are actively fighting that.

You can't ignore the realities of the anti-ME political propaganda and expect to make any progress with ME activism.

 

[BurnA]

AIDS patients also had to deal with misanthropic views by people who had probably had a few loose screws:




http://psycnet.apa.org/psycinfo/1985-14989-001

Wow, we need a few more papers like this to show people the nonsense that is written before a disease is understood.

 

[ScottTriGuy]

@ScottTriGuy. I don't think it is that simple politically but I do hope we will have free access in the future in Canada. Especially since it's an already exisitng drug.

I looked up research trials for rituximab in canada and there is one for its use in lymphoma.

I'm impatient too. I hope we do not have long to wait.

Lucky me - I just found out last week I have a pre-cancer lesion in my colon - if I wait for it to develop into cancer maybe I can get Rituximab - fingers crossed!

 

[ScottTriGuy]

As if that would work. ME has been framed as a psychological illness. The general populace is not afraid they'll get ME because they know they're not so weak-minded as to develop a fear of exercise after a minor illness.

The BPS propaganda machine has done us HUGE harm, not just in what direct treatment is given to us, but in our ability to inform the public about our illness and thereby gain support and funding for appropriate research. We are actively fighting that.

You can't ignore the realities of the anti-ME political propaganda and expect to make any progress with ME activism.

I didn't say to do that.

I said to start our own propaganda.

 

[SOC]

I didn't say we were by ourselves.

I said we more militant and public...and effective in our activism.

That is self-evident.

I doubt you were one of the AIDS patients of the 80's. They were all very sick and most, if not all, of them are dead by now. It's those that hadn't yet progressed to AIDS who have made it through. There's a big difference between being HIV-positive and having AIDS. In the early days of AIDS activism -- the stage where ME activism is now -- there was no such classification as HIV-positive. We didn't even know HIV existed. The only people known to be sick were the AIDS patients. They were very sick and not out being militant.

It wasn't the AIDS patients themselves who were on the streets in the early years. It was the healthy supporters of those AIDS patients. Much later, HIV-positive patients, who are as a group healthier than AIDS patients, got out and did on-the-street activism. We aren't there yet. We are the AIDS patients, the very ill, not the current HIV-positive patients who are much more physically capable.

If you want to talk "we" and "our" with regard to HIV/AIDS activism, admit that you are talking about much later stages of activism because you cannot be an AIDS patient from the 70's or 80's. Later stages of HIV activism is an entirely different situation than ME activists are facing today.

 

[SOC]

Lucky me - I just found out last week I have a pre-cancer lesion in my colon - if I wait for it to develop into cancer maybe I can get Rituximab - fingers crossed!

I don't think B-cell depletion therapy is used for colon cancer, much less pre-cancerous lesions.

 

[SOC]

I didn't say to do that.

I said to start our own propaganda.

Go ahead and try it with no evidence and in the face of public belief that you are hysterical about a nonexistent illness.

 

[TiredSam]

And that's part of our 'marketing' problem.

Framing ME as a 'plague' or 'pandemic' would get their attention better:

"Cure ME before you get ME"

I shouldn't like that, but something about it really appeals to me. If we could get a respected researcher (they don't have to be any good, just respected, in fact the more delusional and corrupt the better) to write a paper about how highly contagious ME is and create a dread panic in the media, you can bet that by the time it was revealed as a fraud a cure would have been found.

Go ahead and try it with no evidence

I don't see why lack of evidence has to be a problem.

 

[SOC]

I shouldn't like that, but something about it really appeals to me. If we could get a respected researcher (they don't have to be any good, just respected, in fact the more delusional and corrupt the better) to write a paper about how highly contagious ME is and create a dread panic in the media, you can bet that by the time it was revealed as a fraud a cure would have been found.

I don't see why lack of evidence has to be a problem.

I think the AND part needs to be considered too. Lack of evidence AND a reputation (even if undeserved) of being hysterical and melodramatic makes it nigh on impossible to convince people they could end up like us.

Once we have more evidence that anyone, not just weak-minded hysterics , can get ME and when we have beaten back some of the BPS BS, then it might be very productive to point out that anyone could end up as seriously ill as we are. We are not there yet. We have a lot of advocacy work to do before we're in that position. So again, we can't pretend that the strategies that will work in later stages of illness acceptance and advocacy will work now. We have to fight the battles in front of us now, not the ones we may face 10-20 years from now.

 

[ScottTriGuy]

@SOC

ETA: to remove my sarcasm and replace it with genuine reconciliation. I don't want to fight with folks on my own team. Saving my energy for the other.

 

[L'engle]

Lucky me - I just found out last week I have a pre-cancer lesion in my colon - if I wait for it to develop into cancer maybe I can get Rituximab - fingers crossed!

Oh that's terrible! Take care.

 

[L'engle]

Well I wouldn't want to be thought contagious. Propaganda in this direction would be very dangerous. Our side needs to stick to facts so we can hold that high ground of having not given in to corruption.