I am quite surprised at the condescending attitude of many of the folk posting on this particular thread. I notice that no one responded to the positive post earlier. Wonder why?
Personally, I think it's as you say below, the overall tone earlier in the thread is mainly due to Marshall's 'unprofessional' bedside manner. You must admit, if anyone could be accused of being condescending, it's you know who. I'm sure if there are others on the MP who are benefitting from it, they'll speak up.
Do most of you really think that people on the MP don't know that Marshall behaves unprofessionally? Do most of you think that most of us don't know how he gets in the way of his own goals? (Which by the way is to make a contribution to science. Go ahead and roll your eyes and take the mote out of the both of them while you are at it.) Do most of you really think we, as a group, are unaware that he has an outsized ego? (Like no one with an outsized ego ever did anything good in the world? Like there are not plenty of researchers with outsized egos? Yeah, I'd love Marshall to have Pall's demeanor. And I'd like there to be better toys in the Cracker Jacks box as well.) And for the people who have gotten well, one of the most difficult things for them, assuming that they believe the MP is all that it is cracked up to be, is no doubt watching Marshall get in his own way.
Do most you really think most of the people on the MP are that desperate and that stupid? Some of the brightest people I know are on the MP. Of course, the people who have been smirking here at our expense--other people like yourselves who are struggling with CFS--are likely to conclude that I must be pretty stupid if that is the case. Yeah, pat yourselves on your self-satisfied backs!
I often detect a note of superiority in people who put down the MP and who also put down the people who choose to do the MP. And it appears that many on this site are no different. Smirk, smirk, smirk. Sheesh! Aren't your faces hurting yet from all the smirking?
I may have missed them, but I didn't see anyone 'put down the people who choose to do the MP' or 'call them stupid'. A lot of us are desperate, that's just a reality, not a derogatory statement. In fact that same desperation may also be why so many are (over?)excited about the XMRV news.
Now that I've behaved just as snidely, rudely, and callously (well maybe not as callously) as some of you....
As someone who is on the MP, I can tell you that I felt much worse for the first two years (it is a feel worse to get better protocol), and so I can understand people who tried the MP and felt like the MP made them worse. There were folk on the MP who did not think I would live through the first six months. I felt as if was near death prior to the MP (I had a close relative die of congestive heart failure and so I'm fairly familiar with the routine); I like I was moments away from death much of the time. Now, I am much better. I have a long way to go yet, and the MP may take me the rest of the way or not. I don't necessarily believe that the MP is the end all myself... just worth a shot having tried many other options myself and not seeing much out there.
Even though, I was probably toward the end of my life, I was not desperate for a cure when I stumbled upon the MP, and I had accepted that I was going to die and soon. Maybe some of the people here are scared to death and scared of death, but don't assume that all or most of us on the MP are.
I'm truly sorry you have been through so much, and so very sick, and can totally understand why you would be angry and
want to defend what has helped you. It is very rare, or at least seems so, to find or hear about anyone who has improved on the MP, so if it helped you, or is helping you, that is great. But even if some of the comments may have come off as rude or not supportive, I hope you'll appreciate the fact, and it is a fact, that it is impossible and has been impossible to have any kind of open discussion or disagreement about the MP over on the MP boards. I'm sure you're well aware of that. Ask too many questions, and one is banned. It's happened to patients, and even volunteer moderators over the years.
As for a cult, we don't try to convince anyone to do the MP, and most of us (other than Marshall at times) are not snide about not trying to convince anyone. We do, however, support each other.
How safe do you think it feels for someone who is on the MP to be a part of Phoenix Rising and read what has been written here? How supportive of a community do you think I could find here?
I actually think you'll find that it is supportive. You'll no doubt hear the other side of the MP story...especially about the many people who have indeed almost lost their lives while on the protocol (which is also well documented), but that is 'supportive' as well, since it may be harmful for some, and those who have gotten much worse may want to speak up.
And I would respectfully disagree with when you say "we don't try to convince anyone to try the MP". Most of you may not, but Amy Proal has posted on many, many boards doing exactly that. Very respectfully, but still, very actively. That's what her website is all about, isn't it...to promote and convince people to try the MP?
If you do come back, I'd like to ask if you know of anyone who has actually finished the protocol, stopped all the drugs, and remained recovered or cured?
I'm not being snide (I hope not anyway)...just asking a question that never seems to get answered.
Thanks a lot! A real supportive community. Yeah, that was a smirk.
Sheesh!
If you'll check out other sections of the forums, you'll find indeed, that is overall a real supportive community. Again, I can understand why you felt the need to speak up, and glad you did.