CellTrend test for ME/CFS (Prof. Dr. Carmen Scheibenbogen, University Hospital Charite Berlin, etc.)

[Jonathan Edwards]

Because physicians in general are often dismissive of fatigue as a symptom. Most likely they explained it away as due to the cancer, and the usual vague suspects like getting old, stress etc.

Apart from that, I suspect the comorbidity is still somewhat rare - 1 year prevalence of NHL in the UK - 7,500 cases (5 year prevalence is about 30,000 cases).

True but a big centre like MD Anderson in the US probably sees 7,000 cases a year alone. That would be about 14 ME cases.

 

[Snow Leopard]

True but a big centre like MD Anderson in the US probably sees 7,000 cases a year alone. That would be about 14 ME cases.

Sounds like a needle in a haystack. Easy to miss if you have not trained yourself to pay attention...

 

[BurnA]

Sounds like a needle in a haystack. Easy to miss if you have not trained yourself to pay attention...

Are doctors not trained to pay attention ?

14 cases every year in one facility is not what i would call a needle in a haystack. In fact I would call it a trend - surely these doctors talk to each other so even if each patient wasn't treated by the same doctor I'm sure it is probable that one doctor might mention to another about the 'crazy' ME patient who claimed to get better.

 

[Gijs]

Doctors still can't distinguish fatigue from fatigue. I get really tired about that ME is PEM! NOT fatigue at all.

 

[BurnA]

Doctors still can't distinguish fatigue from fatigue. I get really tired about that ME is PEM! NOT fatigue at all.

I am a bit surprised at the arguments being thrown up here.... "trained to pay attention" and "distinguish fatigue from fatigue"
We are talking about a patient recovering from ME / CFS. This is not a subtle nuance.
All that is required is the ability of a doctor to listen and then take action.

 

[Kati]

I don't think running a trial would have been different for FLuge and Mella from Canada or UK. Norway has a government run health system. F and M are very busy oncologists seeing hundreds of patients with no time to do ME in theory. The road blocks are there but they can be got through with perseverance. Private ME specialists who try out therapies without doing trials do not have to see 30-50 patients a day. They can set aside days for trials, which a government employed physician would find much harder to get approved. I admit that it is very hard work doing things properly but why do things badly when you can do things properly? The usual answer is that you do not have to face up to the reality that the results may not be quite what you hope!

Thing is, Fluge and Mella are oncologists. They deal with clinical trials every day. Not the case for ME patients.
They were already knowledgeable about Rituximab and its use, side effects and existing protocols surrounding administration and monitoring of patient while infused.

Setting a day aside for clinical trials is ideal, however they do not get paid, that is untill or unless there are funds set aside for the trial. Physicians do not work for free at least not in my world.

 

[BurnA]

Setting a day aside for clinical trials is ideal, however they do not get paid, that is untill or unless there are funds set aside for the trial. Physicians do not work for free at least not in my world.

This is the point Kati. If physicians cared or were interested enough they would set aside a day. Where there is a will there is a way.

While you can say they might not get paid for such a day, I am sure their consultation fees would easily cover several such days over the course of a year.

 

[Kati]

This is the point Kati. If physicians cared or were interested enough they would set aside a day. Where there is a will there is a way.

While you can say they might not get paid for such a day, I am sure their consultation fees would easily cover several such days over the course of a year.

I understand. It is done in all the other fields, HIV, cancer, etc.

What we are facing here is the usual stigma surrounding ME, including lack of funding, lack of existing structures, lack of support. oh, and did I mention the stigma, in research, health care and society?

 

[JamBob]

I am a bit surprised at the arguments being thrown up here.... "trained to pay attention" and "distinguish fatigue from fatigue"
We are talking about a patient recovering from ME / CFS. This is not a subtle nuance.
All that is required is the ability of a doctor to listen and then take action.

I think it is more complicated than that though. At least in England, doctors working in hospitals are under enormous pressure to deal with the "throughput" and to get big lists of people seen in outpatients clinics as well as do their ward work with the acutely sick, teach and supervise their juniors, do their paperwork etc.

This pressure means that when you go to an outpatients clinic, doctors just focus on ruling out red flag symptoms (is this patient going to die?) and once they've done that, they are on to the next patient. They aren't concerned with things like fatigue as this is seen as a "minor" issue from their point of view. At least this is my experience of many endocrine clinics and various other clinics.

Doctors think everyone gets fatigued (especially themselves doing night shifts) and they don't have a way to differentiate between fatigue that impairs your life and the general fatigue everyone gets after they've pulled an allnighter. I think that concepts like PEM are outside the realm of doctors' experience so they just don't understand.

In an ideal world, there would be more doctors under less pressure with more time to explore issues with individual patients but that would require the general population to want to pay for better/more healthcare.

 

[Snow Leopard]

This pressure means that when you go to an outpatients clinic, doctors just focus on ruling out red flag symptoms (is this patient going to die?) and once they've done that, they are on to the next patient. They aren't concerned with things like fatigue as this is seen as a "minor" issue from their point of view. At least this is my experience of many endocrine clinics and various other clinics.

Doctors think everyone gets fatigued (especially themselves doing night shifts) and they don't have a way to differentiate between fatigue that impairs your life and the general fatigue everyone gets after they've pulled an allnighter. I think that concepts like PEM are outside the realm of doctors' experience so they just don't understand.

In an ideal world, there would be more doctors under less pressure with more time to explore issues with individual patients but that would require the general population to want to pay for better/more healthcare.

Yes. It may seem awful that many doctors are like this, but well, they often are!

 

[valentinelynx]

A lot of women in medicine cannot cope with the guilt and opt for low risk specialities.

Evidence? I've heard a lot of speculation about what women in medicine are good for or not good for, but this is a new one on me! Cannot cope with the guilt? Wow. I would say that women have been less likely to enter some so-called "high-risk" specialties because the "old boys' network" has kept them out — e.g. surgical specialties, like orthopedic surgery. This is changing dramatically in the US. The obvious counterexample is OB: perhaps the highest risk specialty of all (in terms of malpractice liability), which has been largely taken over by women in the U.S. Anesthesiology (my specialty) has been popular with women for a long time, because it can offer a better lifestyle balance than, say, surgery. Few people would call anesthesiology a low-risk speciality.

 

[ebethc]

As far as the PACE trial - it is another treatment option. It is another tool. Would I be upset if as part of a treatment plan where all potential options were considered that CBT and GET were tried? Absolutely not. Some fraction of people might get benefit. Do I think that it will benefit all PWME? No. It is these overstated goals, to find THE treatment for the disease that get us in trouble, whether that be CBT/GET/Rituxan/Antivirals, etc. All reasonable options should be used until the day where we have enough data to support that some medicines should absolutely not be used and some are much better than others. We are far, far, far away from that point.

This is an old but compelling post

Yes, yes, yes... Can we please get beyond the ideas: 1) one size fits all re treatment, 2) monotherapy 3) either pharma or holistic treatments are intrinsically superior

The therapies included in the PACE trial aren't necessarily bad.. For the right person at the right time, fine. What WAS outrageous: 1) the terrible science and attendant coverup 2) in this day and age, the "medical community" is still gaslighting us.. please stop telling us it's in our heads 3) these therapies are common sense... it offends me that this money was not spent on medical science.

 

[TrixieStix]

Dear CFS_PhD,
I appreciate your enthusiasm for this study but I think you are being a bit unreasonable and even thoughtless in some of your comments here. Doctors 'hide behind' the need for good evidence because the alternative is very neatly illustrated by PACE - using treatments without good evidence. We need a level playing field of argument.

The reason why doctors do not use unlicensed drugs is that by the time they have finished internship and junior residency with some acute medicine experience they will be aware that they have already caused the death of about five people through treating them. An average orthopedic surgeon will cause the death of about one person a year through treatment. A lot of women in medicine cannot cope with the guilt and opt for low risk specialities. The risk ones are staffed by macho individuals, some of whom practice medicine a bit like playing chicken on a motorbike. I can assure you that most doctors have very good human reasons for not prescribing where there is no good evidence. I have had patients die from gastric bleeding from simple painkillers. I have seen a patient die from rituximab pneumonitis. I have seen the effects of Stevens-Johnson syndrome. Things go wrong all the time I am afraid.

Moreover, most of the unproven treatments that one sees around are fairly clearly being used by physicians whose main objective is to corner a market in a particular practice. If they genuinely wanted to test the treatments they would publish their findings. Why has so little been published on the use of unlicensed treatments in ME? We haere of physicians claiming they have used treatments on hundreds of cases - so where are the data?

So I completely disagree. An insistence on evidence can and should be applied to poorly understood disease. The alternative is staring us all in the face - PACE.

You seem to be suggesting that there are people who are unenthusiastic about this study and are dismissing it. Where did that idea come from? In the research community there is a great buzz about this study. People are wanting to replicate the findings. Efforts are being made to set up further rituximab studies but you may not realise just how difficult it is to do that without making all the same mistakes in PACE. If there is a significant risk of death or severe complications trials are not justified unless they provide evidence that can be generalised from. Simply handing out treatments on a one by one basis is a complete waste of time.

The issue raised on this thread is that the data from Dr Scheibenbogen have been used to justify a 'diagnostic' test and that does not look justified. From what I can see the chances of a PWME getting a positive test is about one in four. And if they get a positive the chances that it has anything to do with them having ME, rather than just being like a normal person is not much better than fifty fifty. That tells you pretty much nothing. Your calculations in the previous post are very impressive but unfortunately you have missed out some rather crucial factors that mean they bear no comparison to standard diagnostic tests like ANA and RF. Nice try but these things have to be done carefully.

Yes, we are all fired up with enthusiasm for the Norway-Germany collaboration. But Dr Fluge himself is very clear that he is against what you are suggesting - trying out rituximab without a clear evidence base. He would much rather that such suggestions were not made until he was sure he was actually on to something.

I see that on the newest thread regarding CellTrend testing there is a lot of frenzy about this testing but reading this older thread leaves me wondering if what we know about these tests and their usefulness has at all changed since this 2015 thread? Has the the data from Dr Scheibenbogen been replicated as of yet? Do you believe CellTrend testing and the conclusions people are making based on it in relation to OI/POTS/CFS and treatments are justified based on the available data?

I am referring to this thread... http://forums.phoenixrising.me/inde...gic-and-muscarinic-receptor-antibodies.46689/

 

[Gingergrrl]

Do you believe CellTrend testing and the conclusions people are making based on it in relation to OI/POTS/CFS and treatments are justified based on the available data?

Hi Trixie, I've been wanting to reply to this and apologize that it it has taken me so long! I do believe based on the published research by Dr. Scheibenbogen, Heidecke, Fluge & Mella (et al) that the autoantibodies tested by Cell Trend correlate with Rituximab responders. A close friend of mine did the Cell Trend tests several months ago and was negative on all eleven autoantibodies (vs. I am positive 2x for seven of the nine autoantibodies) and my symptoms are totally different than those of my friend. So I am confident that Cell Trend does not tell everyone that they are positive and that their results are accurate.

I have no idea if the results correlate with an ME/CFS diagnosis, or if they will end up relating to a biomarker. But in my case, my doctor feels that my results correlate with Autoimmune POTS and with the muscle and breathing weakness that I experience (which has improved from high dose IVIG but is still there). For me, the Cell Trend tests (combined with four other autoantibodies from Mayo and other testing) is enough for me to believe that I could be a responder to Rituximab but am not sure if it tells anything more at this point in time?

 

[Jonathan Edwards]

Hi Trixie, I've been wanting to reply to this and apologize that it it has taken me so long! I do believe based on the published research by Dr. Scheibenbogen, Heidecke, Fluge & Mella (et al) that the autoantibodies tested by Cell Trend correlate with Rituximab responders.

This is not strictly right, Gingergrrl. It was the fall in antibodies that correlated with response, I think. Whether or not there were antibodies to start with was not a helpful predictor of response if I remember rightly. Presence of antibodies in general makes sense as a rationale for rituximab but the Scheibenbogen data do not add to that I think.

 

[BurnA]

Thread here for those wishing to read about Scheibenbogens paper :

http://forums.phoenixrising.me/inde...inergic-receptors-in-patients-with-cfs.40109/

 

[Gingergrrl]

This is not strictly right, Gingergrrl. It was the fall in antibodies that correlated with response, I think. Whether or not there were antibodies to start with was not a helpful predictor of response if I remember rightly. Presence of antibodies in general makes sense as a rationale for rituximab but the Scheibenbogen data do not add to that I think.

I need to re-read the article but what you said makes perfect sense that it is not just the presence of the autoantibodies, versus the drop in autoantibodies with Rituximab, that would make someone a responder. I would imagine if autoantibody production did not go down w/the killing of the B-Cells, that the treatment would not be effective.

If I remember the article correctly, responders were positive for the Cell Trend Autoantibodies plus anti-thyroid antibodies, plus positive ANA titer, which shocked me b/c that is my exact situation. (I hope we are talking about the same article which has 12 different authors and I will click on the link above to be sure)!

 

[TrixieStix]

This is not strictly right, Gingergrrl. It was the fall in antibodies that correlated with response, I think. Whether or not there were antibodies to start with was not a helpful predictor of response if I remember rightly. Presence of antibodies in general makes sense as a rationale for rituximab but the Scheibenbogen data do not add to that I think.

These antibodies are found in a % of healthy people as well correct? Have the findings yet to be replicated by others?

 

[Jonathan Edwards]

These antibodies are found in a % of healthy people as well correct? Have the findings yet to be replicated by others?

I am not aware that anyone has replicated the results. My memory is that more patients had antibodies than controls but only a bit more - not the sort of difference that would suggest that the antibodies being measured were responsible for a specific clinical problem.

 

[Gingergrrl]

I am not aware that anyone has replicated the results. My memory is that more patients had antibodies than controls but only a bit more - not the sort of difference that would suggest that the antibodies being measured were responsible for a specific clinical problem.

My feeling is that these autoantibodies (plus some others) are at the core of my own symptoms but am not sure if this applies to anyone else on PR? I belong to another online group for people w/autoantibodies who have been given various diagnoses but so many have POTS and muscle weakness like me, and also doing IVIG and Rituximab, that it must mean something? I wish I knew what!