Discussion in 'General ME/CFS News' started by justinreilly, Nov 26, 2011.
In the process of watching it, wow! they make us feel optimistic, but time will tell. Its good to see the experts on the panel like Klimas and the gang still pushing for us.
I watched some of it last night. I feel such a debt of gratitude to the patients who come time after time, despite being very sick. I feel bad as I can see the toll the illness is taking in their faces and their bodies. Yet, they spend money to travel there, every six months. Plus, they stay up to date to give knowledgeable testimony and they do research.
Thank you Bob, Mary S. and Pat. Charlotte, Jennie, Lori, Marly and the others, too. We have mentioned the need for young physicians and researchers to step in as the veterans retired. I think we need this with the advocates too.
Pat, I especially want to thank you and Charlotte for your work in researching the NIH grants. That had to be a tremendous amount of work. And if no one else recognizes it and shows appreciation, I want you to know I appreciate it and I recognize it. I think the five-minute summary was more of an explanation of the process rather than a summary. But that is good. The meat is evidently what you gave them in paper form. I hope that will be made public on CFSAC website. And I would love to be kept abreast of what happens after you get it to the proper authorities.
Mary S., I want to thank you for monitoring the CDC website to catch that the studies they use as basis for CBT and GET use the Oxford Criteria.
Mary D., I really appreciate your mentioning the glaring omission in Pickett's testimony and slides that CFS is already in the World Health Organization ICD-10 in the index. What's up with that? Does she not know that or was she intentionally leaving it out?
I wish we had more in the audience this fall. We had such a great showing in May. But I know some patients are still trying to recover from the intense effort put forth last year.
I also want to thank the well people who are working hard, such as Denise, Mary D. and others. I also am appreciative that Christine has been "hired" to help get the government agencies and committee to work together between meetings. Thank you Christine. You give patients an inside track that we need. I am also glad Koh announced that the agencies will be having monthly meetings on CFS in addition to the subcommittee meetings between the twice-a-year public meetings.
I am also encouraged by a few of the new ex-officios. I am so glad that other FDA guy is gone. This new lady seems to be on the opposite end of the spectrum from the other FDA guy. His demeanor sent very negative signals, to say the least.
I am also encouraged that Koh said he wants to get more patient representation on the committee, possibly with orgs having a place. This is good because not only will it give patients more power through voting, but it will free up some of the public comment time for those who are not with orgs.
Jennie, I was blown away with your testimony this fall. When I heard it, I said, "Wow." And you were on target.
(some of what I am referring to may have happened the second day, which is not on CFSAC website yet.)
OH, I know there is more, but that is all I can think of on the top of my head.
We need to continue to push DHHS to livestream the conference.
I am glad the videos are up but it took 2.5 weeks past the live conference to put up Day One of the video [Day Two is still not up; DHHS had said the videos would be up within a week] and even now, there is no public testimony up -- that's 5 weeks past the date people were required to submit the testimony, which was October 25, 2011. So sick patients are required to adhere to a deadline or they don't get their testimony posted or get a slot to speak but the government is allowed to break any and all promises to us. Hypocrisy and double standards, anyone?
My concern is that delay of videos and materials not only slows access of the materials to patients, advocates, clinicians, and researchers but also any access by media. Getting info to media 2.5 weeks past an event is not acceptable to them; we've lost our thunder. I've also written a letter to DHHS asking them to tell us how many people were listening in live to CFSAC; it's probably much less than live videostream. I was fortunate to listen via Skype but not everyone has or knows how to use Skype.
I'm not much of a believer in conspiracies but it's this type of "nickel and diming" behavior, i.e. little actions here and there whether intentional or not, that can erode any power we have to influence the government and educate the public about our illness.
I suggest people continue to register their dissatisfaction with DHHS by writing to email@example.com
I have a friend who works in communications for the gov't and they do track letters, calls, and e-mails. In fact, I would not be surprised if they read these forums.
I thought it was very interesting them talking of sub groups and comparing it to cancer. They mentioned that a long time a go cancer was just cancer, now days they are sub grouped into breast cancer, prostate cancer etc etc and probably sub groups within sub groups and all require different treatments. SOme cfs/me patients have problems with ebv etc other with POTS some have a combination and the list go's on. I think this is important to help effectively treat individuals with cfs/me. I think it may also help dissolve the ME versus CFS debate, they could still group us all together with a good name and similar biomarkers but then sub group us further for more directed treatment.
It looks like things are moving forward atlast, now we just need large sums of money to do adequate research into biomarkers (which i think they have enough but more the better, Nancy rattled off a few good biomarkers), testing and treatments.
Despite having the most severe case of man flu ever experienced by anyone on the planet, I sat through all 4 videos - the most revealing 15 seconds of the seemingly endless drivel was at 13:50 in video 4. The silence was deafening.
Besides that, Mr Marshall and his constant error in calling the illness C'S'F was bloody annoying.
I heard references to 'chronic fatigue' - why oh why are we still unable to get across to those charged with fighting our corner still making these basic school boy errors?
I accept many of the forum members will be encouraged by this meeting, I struggle to understand why - I have become so punch drunk now that I am losing the will to continue with accepting the situation as a good citizen 'should'.
To end on a positive, the patient contribution far surpassed the efforts of the 'experts' (even with the patronising applause).
Max, we should institute a rule that was successfully used at a Canadian conference, to fine someone one loonie (not sure if that's a dollar or quarter) to go to an ME charity (not CAA) everytime someone says 'chronic fatigue'!! (i would add that they could earn their loonie back by using "ME" three times)
If only it were possible to get across to these people the simple steps that would make the lives easier for pwME - is it really too much to ask?
Thanks for posting the vids - much of it was painful, although I'm glad I sat through it.
Even on the you tube page it was titled as CSFAC - do you think this is done on purpose just to bring out us 'angry' individuals to perpetuate the myth that we are somehow unreasonable in our response to those that decide our fate?
Am I missing something. I thought the CFSAC meeting was two days. I only see one.
It wasn't so much the use of the term "chronic fatigue" - I have got so use to those speaking for us using abusive language - it is abusive - it was Mr Marshalls constant use of "CSF - The correct incorect term is CFS.
The uncomfortable silence was the result of Leonard Jason reminding those present of the 10 previously submitted recommendations by the panel, the response from those that have the power to say yes or no, was that "As far as they were concerned nothing had happened".
I want to give a personal big thank you to Andrew for his very courageous, strong, impactful testimony.
For those who want to hear him you can watch it at the above video at 1:17:00.
It is two days but they've only uploaded Day 1.
I thank you, Nielk, and everyone who submitted oral or written testimony. That testimony needs to be put up on the website so everyone can read it. It helps to have something up on a government website that media or others can quote or reference.
I suggest everyone read Pat Fero and Charlotte Von Salis' testimonies about how money has been spent on CFS research.
I would also advise everyone who submitted testimony to check that their testimony is posted and that it has not been edited. I would not be paranoid about this except numerous people have not had their testimony posted in the past and/or have encountered problems with the government claiming they didn't receive their testimony or that it wasn't submitted in time. Fortunately, some people saved the e-mail confirming receipt of their testimony to show federal officials. Why is the government afraid of what a group of sick patients and their supporters would say?
[In fact, it might be interesting if people were to post their testimony somewhere anonymously ahead of time so others could see what they wrote. Not only will this help others with their testimony, it provides media potential quicker access to what they have to say instead of relying on DHHS to post their testimonies.]
day 2 is up now.
please rate and comment on these to let them know we are watching!
Posting testimony doesn't do much good. They claimed they would give priority to new people who had not commented before and it was ALL the same Pandora, Coalition pple, Mary Schweitzer, who has spoken at every meeting since I can remember. I had a spot reserved by phone and they said they "lost" my #. This gets more and more depressing. Lenny's comment about the "meaningful" comment by a patient: that we need help and hope??? And these people want to take over ME and make it ME/CFS. Nancy and Lenny are off, and if the media goes to any of these people and those trying to ingratiate themselves, we will be sunk no matter what.
Gabby's testimony at 18:50
ps. thanks to ancientdaze for your guidance!
The reason that it is the same people is that no one else showed up. If it were not these patients giving up their health and own money to attend, no one would be speaking for the patient community. The DHHS would love to close the book to this illness, no one attending would allow that. I am thankful for Mary, Pat, PANDORA, CAA, Charlotte,Lori, Joe and the other handful of patients that showed and got up extra early to Protest before the meeting in the cold weather. As for them losing your number I believe it, they were in disarray. One call-in from a patient doctor took HHS reps hours to get connected. How do I know that??? I knew the doctor who was set to give testimony and I went after the staff until they connected with the doctor. Had I known you were to testify and had your number I would have done the same for you. It is why as a patient community we must stand together. I appreciate what these patients are giving to this movement. Many come from across the U.S. just the trip is crushing to their health.
We really help each other out when we can trust each other and work together.
Bob, thank you again.
As you said, Bob, it was a mess. They made so many mistakes the days before. Lori got a lot of them straightened out the morning of because she was there and able to stand up for those who had informed her of the problems.
These same pple go all the time, which is their prerogative, but they should not monopolize everything. This is what phone testimony is for as many are too sick to attend. CFSAC advertised that they would prioritize those who have not spoken. They did not. These same people were given priority before any phone comments were mentioned so it was not because of bad connections or losing phone #'s.
You/they are not representing ME. They are trying to create this ME/CFS myth. CFS and the more deceptive mythical ME/CFS is closing the books on "this illness." We do not want to be part of the CFS community and you are damaging our movement.
I just looked again and I don't see it.
Thanks, Gabby! I appreciate the compliment.
My impression is from watching day 1 is there were fewer speakers than usual. So I'm greatful to the people who did show up. And now that you mentioned how disorganized it was, I remember having that sense early on. So I sent extra emails confirming that they had a copy of my talk, and then another one confirming that they had my phone number.
I too had problems and mix ups with them. They gave me a date with the wrong day of the week, It took me a bunch of times to get it straightened out.
When I called them, they really sspunded shakey about their facts. This is my first experience so I don't know if it's always like that or is it because it's Nancy's first time?
I too, am very, very grateful to the people who made a large effort and I know it was hard for them to make it there - to represent us. I know one in particular was very sick and still made the trip. How would it have looked if no one was there?
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