Kogelnik talks about the five stages of idea acceptance

[Fuschia]

I was watching his talk at the 2013 Invest in M.E. Conference in London. He put up this graphic, used in marketing, to explain why he thinks M.E. has taken so long to become mainstream among docs.

He thinks right now that we still have some people stuck at stage one, the outright denialists, stage two people are those who believe that it is a real disease but is still mysterious and that nothing can essentially be done, and that we're seeing stage 3 reactions from some to news about rituximab.

There seems to be a lot of overwrought hand wringing about the safety of rituximab, this blog being a case in point. http://www.sciencebasedmedicine.org/rituximab-for-chronic-fatigue-syndrome-jumping-the-g/

I had heard a lot about side effects of rituximab, it's potential for fatal reactions being one that stood out. But I was surprised to hear, according to Fluge and Mella, that risk is one in 100,000. Roughly the same risk as for going under general anaesthetic. It also is a drug that oncologists and others who administer it have a lot of experience with. They generally understand the side effects and how to deal with them.

So why all the concern about gullible M.E. Patients duped into dubious medical trials? Seems to me to be less about "proper medicine", more a psychological resistance to adopting a new way of thinking.

 

[SilverbladeTE]

most people are dumbasses because they WANT to be dumbasses:
it takes too much effort to think, it takes too much courage to put your head above the rest of the "herd" :/

 

[barbc56]

There seems to be a lot of overwrought hand wringing about the safety of rituximab, this blog being a case in point.http://www.sciencebasedmedicine.org/rituximab-for-chronic-fatigue-syndrome-jumping-the-g/

I'm not sure I agree with you about the above article. The authors are only saying that because the original study is a pilot study, some patients, may think it was a randomized, double-blind, placebo-controlled study and thus think that Rituximab has been proven to be effective as a treatment for me/cfs. This is very different than saying we should ignore the pilot study. Plus we are talking about a chemotherapy drug which might have different side effects on the me/cfs population. I feel these are valid points.

From the same article:

So basically, the evidence consists of one case report (involving a different drug!), a case series of 3, and one preliminary controlled study with 30 patients showing a 2/3 response that was delayed and transient. Preliminary studies serve to justify further studies but they are not sufficient to justify forging ahead with offering the treatments in clinical practice. All too often, attempts to replicate preliminary studies fail, and initially promising results are discredited by larger, better studies. XMRV was a prime example of that.

My bold.

This article was written over a year ago and atm I can't remember what progress has occured since then. More research replicating the results of the pilot study would be a game changer.

I really have a lot of respect for Fluge and Mella and think this might be a promising area of research. However, I am not convinced that doctors should be treating patients, unless in a study, when the science is not there at this time to say it's effective against me/cfs.

It's just a shame they didn't get funding.

Barb

 

[wdb]

It sounds to me like a bit of a fallacy to suggest that all ideas go the five stages of acceptance. Isn't it the case that in that in most areas of science and medicine research there are many competing theories and ideas and ultimately only one can be correct, so most actually do turn out to be wrong.
Rituximab is without a doubt one on the most exciting recent developments but it is still a long way from proven, most anecdotal evidence turns out to be a red-herring and very many pilot studies fail to replicate.

 

[Kati]

I would like to applaud Dr K for giving patients a chance at a drug that is safe enough to give to rheumatoid arthritis patients.

Patients have a right to compassionate access of off-label drugs when there is nothing at all in the pharmaceutical market for ME. We all know that clinical trials require funding and endless approvals from governments and ethics bodies. The Rituximab paper published in 2011 and still now, we are not closer to trials in the US. Heck, HHS, NIH and CDC are in no hurry to deem ME serious enough to spend 1% of what HIV gets in research.

While I do support clinical trials, there was no doubts in my mind that Rituxan was the thing for me to try. i would do it all over again, and i will, with the next opportunity.

Here in Canada, I am being told to meditate and to go to the pool and to see a naturopath. No, no, and definitely no.

i want medicine, access to testing and drugs. i want health care.

 

[barbc56]

It sounds to me like a bit of a fallacy to suggest that all ideas go the five stages of acceptance. Isn't it the case that in that in most areas of science and medicine research there are many competing theories and ideas and ultimately only one can be correct, so most actually do turn out to be wrong

.

This is what Ioannidis talks about. Unfortunately, his theory is often interpreted as meaning that science is ineffective or useless.

While science is not perfect and should be looked at with a critical eye, right now, it's the best method for gathering information.and putting it into practical use.

Science is a process and can be slow. While this is frustrating, I would rather wait to try a treatment that has held up to the rigours of science.

Others feel differently, but it's a personal choice.

Barb

ETA I would really like to see more studies about Rituximab in the future.

 

[Ninan]

Does anyone know how Kogelnik's treatments are going? Does he have the same success rate as Fluge and Mella?

 

[Gingergrrl]

@Ninan I am tagging @NK17 for your question as she knows a lot re: this issue and I think can address your question.

 

[Roy S]

There is a thread about the referenced "jumping the gun" blog here, and the blog has some good comments.
　
http://forums.phoenixrising.me/inde...lnik-rituximab-and-cfs-jumping-the-gun.21329/
　
This older blog by Dr. Wallace Sampson on the same science based medicine.org website has significantly more hogwash and balderdash:
http://www.sciencebasedmedicine.org/cfs-viral-vs-somatization/
　
　
Professor Malcolm Hooper has a good comment on that blog ending with
"...Please read them and do not belittle sick patients by the use of terms like somatisation."
　

 

[Ninan]

Thanks. There seem to be at least two who has been official with the fact that they weren't helped. Then one who was helped a bit and at least one who got much better. I found Cort's blog from last year:

Kogelnik felt the success of the early Rituximab trial shifted the conversation for chronic fatigue syndrome (ME/CFS) in a good direction but he’s cautious about the future of Rituximab in ME/CFS. Since researchers tend to pick patients they think will prove their theory early, small studies runs the risk of having inflated results. Dr. Peterson has warned about this as well. It’s hard to imagine that Dr. Peterson didn’t provide the Chronic Fatigue Initiative pathogen study with patients who were more likely to test positive for pathogens. Dr. Kogelnik is using Rituximab in his practice. His patients are monitored very closely as they start off with vital signs being taken every 20 minutes. Don’t think I said this According to the Rituxan product label about a third of patients will get an infusion reaction and according to Kogelnik, Herxheimer type effects are fairly common but like with other treatments in this disorder, the people who get worse in the beginning often respond really well later. An antiviral/rituximab combination is being used on a few patients. Kogelnik reported that some patients are experiencing the same type of dramatic recovery Fluge/Mella’s patients experienced. The fact that Kogelnik’s worried about patient selection suggest, however, that he’s not getting the kind of jaw-dropping results Fluge and Mella did.

Read more: Medicine for the 21st Century: The Open Medicine Institute Takes on Chronic Fatigue Syndrome (ME/CFS) http://www.cortjohnson.org/blog/201...ute-takes-on-chronic-fatigue-syndrome-me-cfs/

 

[NK17]

Does anyone know how Kogelnik's treatments are going? Does he have the same success rate as Fluge and Mella?

Hi @Ninan, as far as I know there are a couple of Dr. Kogelnik's patient who have been treated with Rituxan here on PR.
I would hope they'll come forward and tell you about their treatment's experience and success or lack of thereof.
Sorry I don't have more informations.

 

[Ninan]

Hi @Ninan, as far as I know there are a couple of Dr. Kogelnik's patient who have been treated with Rituxan here on PR.
I would hope they'll come forward and tell you about their treatment's experience and success or lack of thereof.
Sorry I don't have more informations.

Thanks. I was mostly interested in the statistics but it seems they aren't so good over there. Too bad. I wonder what the differences are.

 

[alex3619]

most people are dumbasses because they WANT to be dumbasses:
it takes too much effort to think, it takes too much courage to put your head above the rest of the "herd" :/

I think its more that we are taught to accept and not examine, and that modern education is failing the community, globally. However I am mindful of some of my "rules":

"12. What does one lemming say to the other? "Everyone is moving this direction, it must be a good idea." Beware your fellow lemmings - just because something is popular doesn't make it right or a good idea. Make up your own mind after at least some investigating and if you still agree then follow the others, just be cautious of cliffs and oceans."

People who conform get social praise from authority, people who don't get social disapproval. Its more about the nature of authority than the nature of the subject matter and whether or not its correct.

 

[alex3619]

It's just a shame they didn't get funding.

My understanding is there is sufficient funding for the Norwegian Rituximab study, and it commenced in May. Does someone have information to the contrary?

 

[barbc56]

@alex3619

Thanks, you jarred my memory. Not an easy task.

Barb

 

[Ninan]

My understanding is there is sufficient funding for the Norwegian Rituximab study, and it commenced in May. Does someone have information to the contrary?

They have started doing interviews with potential participants. It'll take a zillion years (or four) until we get the results but at least it is happening!