Attack on Lipkin/Hornig and Fluge in a medical magazine

[SOC]

Sounds wise. Some label this man as D.U.M.B, Doctor with Unexplained Medical Belief (D.U.M.B.)

Love it!

I think Doctor with Unexplainable Medical Belief (D.U.M.B) would also apply. They got lots of belief, but they got nuthin' to back it up.

 

[alex3619]

The problem is that many will believe in this crap if no one responds to it... Maybe I at least should comment under his article. He actually responds to comments on the article he writes, so that can be interesting.

When you reply to things like this it is not for the writer. Its for anyone reading the comments.

 

[alex3619]

OK, my first pass list of problems. My list may be longer than his entire article.

First, there is abundant evidence that something is wrong with our immune systems. If nothing else, as has been pointed out the fact we often respond to Rituximab is empirical evidence of an immune issue.

No detailed knowledge of cytokines means he is a non expert. So this is just opinion.

The comment on the cytokine study glossed over important details.

Some of the p values were very very low, and on a study this large its very unlikely they were found as error from fishing. As others have pointed out its appropriate in early investigative studies to examine the data looking for clues. The problem is that in intervention studies fishing for results and ignoring everything else that does not agree with you is a very poor methodology. Early investigatory studies are not advanced clinical intervention studies.

We have many candidate biomarkers, with 90-95% accuracy ranges now. They all need further validation of course, which requires time, effort and resources.

I will repeat, the value of Rituximab is empirical. We are still scrambling to explain it. The way the immune system is explained in the article gives the impression its a big black box, and you can either stimulate it or suppress it. It gives no awareness to myriad complex sybsystems including feedforward and feedback loops.

Let me make it very clear there is strong evidence something is wrong with our immune systems for a large subset, especially NK function. One of the issues that we keep running into is that the patient cohort is heterogenous. On the one hand people like to treat it as if everyone has an identical problem, and on the other hand if something does not work 100% then its wrong. Most medicines and treatments do not have 100% success ... people and situations are just too variable. This is even without a heterogeneous cohort.

The Rituximab results are the strongest evidence about Rituximab. When theory and real world evidence clash, its time to look again at the theory. This does not mean you don't keep testing the evidence to see if its robust.

 

[deleder2k]

I wrote to him, and he actually says he believe in Lipkin because he engaged in killing XMRV. Strange.

He finds it unethical to do a study on cyclo even though 2 persons with breast cancer got better, and 3 got better in a pilot study... I don't know what to say to that. He links to a Norwegian site about general side effects of cyclo. Something like this: http://en.wikipedia.org/wiki/Cyclophosphamide#Side_effects

 

[SOC]

I wrote to him, and he actually says he believe in Lipkin because he engaged in killing XMRV. Strange.

He finds it unethical to do a study on cyclo even though 2 persons with breast cancer got better, and 3 got better in a pilot study... I don't know what to say to that. He links to a Norwegian site about general side effects of cyclo. Something like this: http://en.wikipedia.org/wiki/Cyclophosphamide#Side_effects

You can't convince people whose ideas are based on emotion and belief, not logic and evidence. Logic doesn't work with them because they're not using logic in their thinking. They believe what they believe and no amount of evidence and logic will change belief.

You're probably wasting your time trying to talk to him. Energy is probably better spent pointing out the flaws in his argument in a public arena so that other readers who are willing to use logic can also see those flaws. They might be convinced where he will not.

 

[NK17]

Love it!

I think Doctor with Unexplainable Medical Belief (D.U.M.B) would also apply. They got lots of belief, but they got nuthin' to back it up.

If it's a belief you can't back it up

 

[deleder2k]

It is public. Everyone can see the comments. After my comment he says now that he believes in Lipkin, and he refuse to answer whether he believes the OMI report is wrong when they say "Conclusion: Sufficient evidence supports the finding of immune dysfunction in ME/CFS." He said in his article that there was no proof of an f*** up immune system.

I think this is going the right way. He doesn't know what he is talking about. He is a doctor, and I am some low level sick economist with ME. But it shines through that he needs to do some basic reading on this disease. He should know better as a MD.

 

[NK17]

@deleder2 I would not waste any time in commenting and engaging with Dr. Mads (!).
I agree with Prof. Edwards that he should be left in his hole of ignorance.
Soon real science done by real scientists will prove him wrong.

 

[Esther12]

Discussing things with others can be a good way of learning and thinking though.

I was reading some of the other articles from that site... some irritating stuff.

 

[deleder2k]

I am not spending a lot of time on this, but when he say that there is no proof of immune abnormalities I simply quote IOM's report. Every doctor and other readers reading this magazine can make up their mind after they've read the discussion. Someone has to stand up and say no top psychobabble and other bullshit. I think it is strange that the magazine allows articles with statements with no basis in reality.

 

[mango]

I think it is strange that the magazine allows articles with statements with no basis in reality.

i couldn't agree more!

reimer is infamous here in sweden, he's been doing this for years... repeatedly expressing ignorant, outrageous and inflammatory opinions on his blog on dagensmedicin.se; targeting not only me/cfs but others too. he's been given lots and lots of opportunities to learn about facts and science, but he obviously chooses not to...

 

[Snow Leopard]

He finds it unethical to do a study on cyclo even though 2 persons with breast cancer got better, and 3 got better in a pilot study...

So he thinks that it is ethical to let millions of people with this illness suffer because he personally wouldn't want to give a drug to 40 (willing) participants in a trial?

 

[alex3619]

So he thinks that it is ethical to let millions of people with this illness suffer because he personally wouldn't want to give a drug to 40 (willing) participants in a trial?

Willing and informed participants. We either know the risks or will research them.

 

[Vic]

The bias on these forums is pretty staggering sometimes. Mads Reimer makes some good points. There is absolutely no reason to believe something is wrong primarily with the immune system in CFS/ME. There are certainly differences in cytokines and NK cells and whatever else, but to think their manipulation would fix anything is still just shooting in the dark.

Of course they can try, but it does seem stupid and maybe even unethical to try such a damaging drug. Some side-effects of Cyclophosphamide: nausea, vomiting, stomach ache, diarrhea, joint pain, unusual tiredness tiredness or weakness, and lethargy.

What the fuck are they thinking?

 

[aimossy]

So, isn't it therefore so thoroughly phenomenal that people would feel better on such a drug then, or even rituximab for that matter @Vic
I don't think people are assuming the immune system is the primary issue and only issue. It's hardly surprising for the immune system functioning to be viewed, for good reason, to be a highly suspicious suspect in the ME/CFS story.

 

[A.B.]

Experimental results trump theoretical knowledge. The Rituximab pilot study implies autoimmunity. I'm not aware of other drug trials on CFS patients with results this good.

Not continuing this line of research would be highly unethical. There is an urgent need for proper treatments.

 

[Vic]

Experimental results trump theoretical knowledge. The Rituximab pilot study implies autoimmunity. I'm not aware of other drug trials on CFS patients with results this good.

Not continuing this line of research would be highly unethical. There is an urgent need for proper treatments.

The Rituximab trials are interesting, but they still don't imply autoimmunity. The overactivity of B-cells and swelling of lymph nodes could be simply because an impairment of lymphatic functioning and/or an increase in extra-cellular debris from chronic tissue damage (physically caused, like tissue injury, not autoimmune).

Plus from what I've heard, Rituximab doesn't seem to be curative, as many just relapse. I don't know what the rate is or the quality of improvement, though. Does it just temporarily reduce cytokines or can it create a lasting change? Guess they'll find out.

 

[Bob]

There are certainly differences in cytokines and NK cells and whatever else, but to think their manipulation would fix anything is still just shooting in the dark.

I guess that's a question that research studies would be able to answer. Nancy Klimas is using a computer model to test drugs that interfere with cytokines; It's going to be a case of trial and error.

There is absolutely no reason to believe something is wrong primarily with the immune system in CFS/ME.

Yes, we're in the dark about the cause of ME, but there are research leads.
I think there are lots of research leads that suggest the immune dysfunction is a central feature of ME/CFS.

There's a wide variety of immunological research being carried out, and I can't see how we can possibly conclude that the immune system doesn't have a role to play.

It's early days, but the success of Fluge and Mella's research suggests that B cells play a role in the illness, at least for a subset of patients.

Nancy Klimas is carrying out an autogolous stem cell study after some of her patients experienced significant improvement after an experimental therapy. (I don't know the details.)

Prof Lipkin is investigating NK cell function, and even the CDC is investigating NK cell function.

There have been limited improvements in subsets of patients with ampligen, immunovir, and anti-virals.

Of course they can try, but it does seem stupid and maybe even unethical to try such a damaging drug. Some side-effects of Cyclophosphamide: nausea, vomiting, stomach ache, diarrhea, joint pain, unusual tiredness tiredness or weakness, and lethargy.

What the fuck are they thinking?

I agree it's a heavy-duty drug. But it's a heavy-duty illness. The reason that they're trialing this drug for ME is because they've already observed its efficacy in some of their cancer patients who also had ME. And their very small pilot study of three ME patients also demonstrated positive results. They're not randomly coming up with an idea and prescribing a random drug to hundreds of ME patients. They're carefully investigating and observing it.

 

[lansbergen]

There is absolutely no reason to believe something is wrong primarily with the immune system in CFS/ME

Well an immune modulator saved my live and I have improved a lot by using it.

 

[Gijs]

I must say that i think there is nothing primarly wrong with our immune system either. I agree with this doctor at some point, sorry. I would never use RTX as this moment ( according the scienetific data) as a patiënt. My mother used it an she almost died after 6 infusions, she did get a terrible shock! Very dangerous. The problem of ME is in the brain.