Daffodil
Senior Member
- Messages
- 5,875
i think jenny mccarthy should do a huge press conference demanding that the infectious cause of autism be found.
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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.
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We must flood into the organisations. What percentage of people with ME/CFS are members of an organisation now? 5%? Imagine what power we would have if that was 80%.
You know I'm staggered by how rude and aggressive some of you are. I'm not a troll and I'm not baiting anyone. Because I work in another field (molecular cell biology) I'm wary of commenting on a field I'm not expert in (retrovirology). I came here to get an understanding from this perspective after reading some science blogs and information on other forums. It hasn't been a very edifying experience.
Hi, Bob, thanks for the reply. I only have an academic interest - my sister thought she had CFS and asked me to look into the XMRV story for her as I'm a scientist. I have to say that I'm pretty taken aback by some of the comments here about scientists, it's pretty shocking really. I'm entirely agnostic about XMRV though I have to say from what I've read, it seems unlikely that it's the cause of CFS.
Dear sir letter:
The letter below was displayed on a bulletin board during the late 1980s in the corridor of the division at the Centers for Disease Control that has been responsible for investigating "chronic fatigue syndrome" for the last twenty-five years. It was written by an anonymous CDC scientist. Larry Schonberger, the government epidemiologist who supervised the agency's Lake Tahoe investigation from his office in Atlanta, took it down--reluctantly--after one of his colleagues observed me copying its contents into my notebook. "This will come back to haunt us," the staffer told Schonberger. The actual letter came to me via the Freedom of Information Act.
http://www.oslersweb.com/files/dear_sirs_I_am_sick0001.pdf
Hi Alex. Thanks for the input. Could you explain a bit more what you mean? I see it's a problem to reach people. Once they are members of an association, for example, they can easily be reached. But before that, if they're not reading forums, it might be more difficult. Especially if you live in a country where doctors are not knowledgeable or have strange ideas about ME/CFS. It certainly can be done though, nevertheless.Hi eric_s, I agree, it is definitely a numbers game. However, I think the entire way we are treated dis-empowers and demoralizes most of us. We need to find a way to reach out to every patient, and empower them. Bye, Alex
...you may want to watch this video as a starting point. Or read the "dear sir letter" on the Oslers web. website.
[video=youtube;KhB-701-BMU]http://www.youtube.com/watch?v=KhB-701-BMU&feature=player_embedded[/video]
I think students and post-docs are going to read the comments in TWIV, in Science, and maybe even here or mecfsformus, and they are going to choose some other disease to research.
Wonder no more! Simply go back to Sept 2009 and look at the progression of XMRV.
Or if you are really brave - go back 20 years plus, to 1988 and consider the 3,000 plus pieces of existing research in CFS.
That should give you some clues on what is likely to come of it.
Sorry, not a happy post. With recent developments, Coffin, Levy, Science requests for voluntary retraction, CDC/NIH not allocating any real funds towards CFS (and in light of these developments that they probably knew were coming - that was all the justification they needed) I am not feeling very hopeful.
Research and science - at this juncture - have and continue to fail us
Research and science done by the government and with the government involved is screwed. Got that message loud and clear. Getting funding for good organizations like the WPI, and others from private funds still works! Just need a Mark Zuckerberg or Sergey Brin and others to kick down some serious cash for research.
Good news is people are waking up fast and information travels.
Compared to where we were 6 months ago, the awareness of what governments intentions truly are has increased exponentially. Nobody is bamboozled anymore by the BS and propanganda. People get it.
You can see it in the anger and frustration coming from patients. It's why everybody is so angry now, they have awakened to the reality we all face. Everybody knows it's a big joke when a negative paper comes out or when Coffin claims to leave XMRV behind after he just found it, but can't prove where it came from. THAT IS HUGE.
I went to a lyme group the other day. They knew exactly what was up. It's no secret anymore.
Cat's out of the bag.
Now we just have to figure out how to network with other sick groups and take our governments back from the special interests, and raise funds for real research.
Cast a big net folks, powers in numbers. Get the word out to all the groups being screwed. We can beat this if all the Lyme, cancer, CFS, autism, etc patients network and compare notes.
Hi Alex. Thanks for the input. Could you explain a bit more what you mean? I see it's a problem to reach people. Once they are members of an association, for example, they can easily be reached. But before that, if they're not reading forums, it might be more difficult. Especially if you live in a country where doctors are not knowledgeable or have strange ideas about ME/CFS. It certainly can be done though, nevertheless.