Gingergrrl
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I wondered about this, too, but am truly hoping this is not the case.
Harriet Hall CFS: Rituximab Revisited in Science-Based Medicine
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I wondered about this, too, but am truly hoping this is not the case.
Sorry you took it the wrong way. I tried to be careful and say "many have brought up" after my cost comment. I thought it was pretty obvious.
No you didn't say that laws should be broken via patient privacy. But there have been many calls, including yours, for them to share their info. I did not mean anything personally against you.
And not all my comments were directly addressing your words. Sorry if you mistook it that way.
Internet messages, texts, etc... often lose context then speaking in person.
Kati
Patient in training
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i don't think @beaker attacked you personally, @Gingergrrl, she had some comments that were on point and that is why i liked it.
Gingergrrl
Senior Member
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@beaker Thank you for explaining and I didn't feel personally attacked as much that the message was confusing b/c it talked about breaking patient confidentiality, disclosing the cost of treatment or even withholding off-label treatments, none of which I said. When you quoted me alone and typed the reply, I thought it was a reply to me (vs. a general reply to lots of comments and ideas.)
Hope that makes sense and no hard feelings (@beaker or @Kati!)
What I was trying to convey was that what Harriet Hall did disclosing comments that Whitney wrote without permission and then attributing them to Rituxan without any proof was horrific. I was also trying to separate out what she did from the fact that I believe that ultimately all this Rituxan data should be shared between the different docs and researchers when the time is right and that this can only help PWME in the long run.
BurnA
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rebecca1995
Apple, anyone?
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Absolutely. This blog is an attempt to discredit Dr. Davis, Dr. Kogelnik, the OMF, and the Davis family in the guise of "protecting patients."
Why? Because the establishment has a vested interest in continuing the perception of CFS as a largely psychosomatic condition that can be treated with CBT/GET.
This is the establishment's approach: Attack the OMF because, if properly funded, it will topple the psychiatric paradigm. Attack drug treatment of CFS, and those who prescribe it, to downplay the grave biological nature of CFS.
Harriet Hall and her ilk are desperately afraid that the OMF's rigorous science will expose 30+ years of lies.
Harriet Hall is an ex-military physician with an interest in Gulf War Syndrome. Presumably she is aware of Sir Simon’s work on GWS. Whether she knows him personally or not I don’t know. That would be pure speculation—like her blog.
http://connection.ebscohost.com/c/articles/37563970/gulf-war-syndrome-emerging-threat-piece-history
http://connection.ebscohost.com/c/articles/37298906/gulf-war-syndrome-gulf-lore-mythology
http://connection.ebscohost.com/c/articles/37563970/gulf-war-syndrome-emerging-threat-piece-history
http://connection.ebscohost.com/c/articles/37298906/gulf-war-syndrome-gulf-lore-mythology
Hear hear - excellent comment.
All these people are linked to each other and they will be more of this to come in the near future as the pressure increases and the psychobabblers ME empire comes crashing down around them.
I was very disturbed to read that she speculated on a sick patients circumstances on a public forum for the whole world to see. This was an attack on the OMI and the positive publicity that Dr Davis and Whitney and his mother Janet have achieved in the past year.
As Dr Jonathan Edwards said this would be a breach in the UK under GMC regs. Anyone know of the medical license rules in US and what the position would be?
However it may not achieve much as she is retired. She is an old retired busy body sticking her nose into a very complicated issue and speculating on a sick patients private life who did not have capacity to respond. Sickening woman.
Given she is aware of this forum if she wanted to "help" patients then she do a blog on the PACE trial and those clearly dangerous treatments. These self proclaimed scientists and skeptics are a very hypocritical bunch I find (I.e. Ben golacre).
The OMI is a private clinic and people are entitled to take experimental treatment if they so choose. Dr Kogelnik and the OMI are brave to be pursuing biomedical reasearch and treatment and I for one fully support them for standing up for real science against the psychobabble.
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Regardless of the politics and the science surrounding RTX and this particular article, I find that whenever a patient personally identifies and believes a certain treatment made them worse, that they are usually subjectively correct.
Patients with this illness are exquisitely sensitive and thus very in tune with their bodies and their reactions.
I've read Whitney say that he thinks RTX made him worse and I've read the same thing from his wonderful and dedicated mom on Twitter. Therefore, I have to personally believe him, and others on their opinions of specific treatments, until a blood test or brain scan or whatever is found to be able to identify benefits or harms more objectively.
Patients with this illness are exquisitely sensitive and thus very in tune with their bodies and their reactions.
I've read Whitney say that he thinks RTX made him worse and I've read the same thing from his wonderful and dedicated mom on Twitter. Therefore, I have to personally believe him, and others on their opinions of specific treatments, until a blood test or brain scan or whatever is found to be able to identify benefits or harms more objectively.
Harriet Hall, in case you are lurking on this site, I am horrified by what you wrote on your blog: "He [Whitney Dafoe] posts as “Whit” on the Phoenix Rising forum."
How do you know that “Whit” is Whitney Dafoe? Did he tell you? If so, did he give you permission to transfer his personal health information to your blog?
People post under usernames on forums precisely so that they can share personal health information without divulging their identities. If you were still a practicing physician you would be in violation of HIPAA. http://www.wikihow.com/Report-HIPAA-Violations
In any case, what you did is unethical. Make that EXTREMELY unethical.
How do you know that “Whit” is Whitney Dafoe? Did he tell you? If so, did he give you permission to transfer his personal health information to your blog?
People post under usernames on forums precisely so that they can share personal health information without divulging their identities. If you were still a practicing physician you would be in violation of HIPAA. http://www.wikihow.com/Report-HIPAA-Violations
In any case, what you did is unethical. Make that EXTREMELY unethical.
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Dufresne
almost there...
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I couldn't agree more. I believe there's a very good chance RTX made him worse, and my guess would be that he's dealing with an infection(s). Fluge and Mella warned this treatment could be contraindicated in the severely ill.
In any case we all have the right to decide what we try in the way of treatments and it really irks me when anybody endeavors to tell us what tests and treatments we should have access to.
The hypothesis makes some sense, but this is indeed just a guess. I'm very uncomfortable with public speculation - here, or anywhere else - about a patient who's too sick to speak for himself. If Whit is now being used as a political football that is not right.
Where and when?
I'd like to see the quote, because I don't remember them ever saying this. The closest I can think of, from watching 3 of their Invest in ME presentations, is that it seemed that perhaps the roughly 1/3 who didn't respond (in the phase 2 trial) tended to be the more severely ill (or perhaps the more long term, I can't quite recall) but I think that was just an observation (i.e. something that might be worth testing to see if it's true) and not a finding, and that's not at all the same as suggesting a contraindication.
Thanks for your comments and putting things straight; who are the Germans you refer to? Prof Scheibenbogen? Is there any info about that ?
Dr. Hall is not a psychiatrist. She's a family medicine specialist. At one time she was a flight surgeon.
Barb
Jonathan Edwards
"Gibberish"
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Dr Scheibenbogen has certainly relayed some experience with use of rituximab, although I do not know exactly in what capacity. I am not aware of formal publication other than a report of an adverse outcome. So I cannot give any further information. However, having some experience in several countries has helped researchers in discussion get a feel for further investigation strategies. The level of information available is not ideal but there may be lots of different reasons for that.
I couldn't agree more! Along with the speculation I find the leaps in thinking also uncomfortable. But I guess that's part of speculation.
I'm also uncomfortable with the tone of some posts here even though I might agree with the sentiment. This also applies to Dr. Hall's blog. In fact for anything written.
Sometimes there are other ways to express ourselves to make a point Otherwise, we are only discredited and any information possibly ignored.
I think venting is fine but maybe in the members only boards or chat room? I really don't have a more concrete suggestion about this and there are certainly gray areas.
Nor am I saying I'm holier-than-thou as sometimes I slip into this mode without realizing it. But I'm working on it.
Barb
halcyon
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Dr. Hall should be given no quarter here. I have read her articles, and more illuminating, her comments on the articles. Make no mistake, she is an illness denier. She doesn't believe CFS exists. She appears to be of the Shorter/Showalter school, believing symptoms of CFS are the modern day "culturally acceptable" expression of made up symptoms (the fits and paralyses of olden times.)
The SBM site is not our friend either. Given the state of research on this disease, science based medicine cannot be fairly applied to us. In their eyes we are guilty (of malingering) until proven innocent.
Marky90
Science breeds knowledge, opinion breeds ignorance
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Why does it makes sense? As far as i can tell there`s no reason to think hes suffering from infection. It sounds like the the typical very severe case, extremly low treshold for all stimuli etc.