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

[msf]

Well, as the Gottfries trial we discussed in the other thread shows, sometimes successful controlled trials don´t lead to anything.

 

[BurnA]

I know we have mentioned this before but it might be worth highlighting again.

What are the chances that Fluge and Mella are the only doctors to have treated ME/CFS patients with RTX and seen a response ? On top of that what are the chances that these same two doctors also happen to be the only doctors in the world who treated ME/CFS patients with cyclophosphamide and saw a response ? Its most unlikely, yet these are the only two doctors who wrote papers and performed proper trials with these drugs.
The fact that they are not ME/CFS specialists says even more.

 

[msf]

Your post seems a bit tautological, BurnA. An ME specialist couldn´t have discovered that Ritux was effective; only oncologists (like Fluge and Mella) or rheumatologists could have done that, because only they prescribe Ritux.

 

[BurnA]

Lots of people other than Fluge and Mella seem to be using rituximab but where are the data?

Hardly 'lots' or this conversation would never have started

 

[Jonathan Edwards]

Your post seems a bit tautological, BurnA. An ME specialist couldn´t have discovered that Ritux was effective; only oncologists (like Fluge and Mella) or rheumatologists could have done that, because only they prescribe Ritux.

Can't see why not. When I used rituximab rheumatologists had never heard of it. I'd never heard of it until I asked if there was such a thing as an anti-CD20.

 

[Jonathan Edwards]

Hardly 'lots' or this conversation would never have started

OK, more than three.

 

[msf]

Maybe so, but even if that´s true we can´t credit Fluge and Mella with showing great foresight (which I think was BurnA´s point), we can only credit them with being oncologists. Of course, they showed they were excellent scientists by following up on this stroke of luck.​

 

[msf]

I don´t know why that last post was offset.

 

[BurnA]

Maybe so, but even if that´s true we can´t credit Fluge and Mella with showing great foresight (which I think was BurnA´s point), we can only credit them with being oncologists. Of course, they showed they were excellent scientists by following up on this stroke of luck.​

Nope. Not my point at all. My point is along the lines of the conversation in that a lot of doctors don't seem to write papers and perform work to a required level of diligence.
They didnt have foresight. But they didnt ignore what they saw when they could have, and i am suggesting that other doctors may have done this before, given the unlikely events that i mentioned in my previous post.

 

[Jonathan Edwards]

Maybe so, but even if that´s true we can´t credit Fluge and Mella with showing great foresight (which I think was BurnA´s point), we can only credit them with being oncologists. Of course, they showed they were excellent scientists by following up on this stroke of luck.​

I don't think that was BurnA's point. The point is that they made an observation that probably lots of other oncologists were in a position to make (since quite a few lymphoma patients will have had ME) and did something about it in a systematic way. Why didn't any of the ME physicians, some of whose patients will also have had rituximab for lymphoma, make the connection?

 

[A.B.]

Wasn't one of the first patients (if not the first?) a nurse from Fluge and Mella's hospital? That might be a reason why they took this more seriously.

 

[Sidereal]

It's not just rituximab either. I know of a case of longstanding (childhood onset) ME/CFS + FM who had a two-year remission after cyclophosphamide + something else for breast cancer. None of her doctors showed the slightest bit of interest in the fact that her chronic fatigue and pain were gone for two years after this seemingly unrelated treatment. Most doctors are not like Fluge and Mella.

 

[msf]

Because they didn´t see the patient after they developed cancer? Even if they could still afford to, I don´t think many people with ME would have the energy to pursue both kinds of treatment.

 

[Sidereal]

Because they didn´t see the patient after they developed cancer? Even if they could still afford to, I don´t think many people with ME would have the energy to pursue both kinds of treatment.

No, I am talking about the oncologists who didn't give a crap that all her other symptoms disappeared, not just the cancer. Who knows, they probably thought it was psychological.

It would be helpful, by the way, if you quoted posts you are replying to by hitting Reply under the post in question and typing under the quote box.

 

[msf]

Sorry, I was replying to Prof. Edwards. I will do as you suggested in future.

 

[Kati]

Sure they publish, but not in the way you need to get something licensed, as I see it. Every single case needs documenting in detail if you want to convince the right people you are serious. YOu need to show that at every stage you are maximising opportunities for proper control conditions. You need to do formal dose response studies. There are good reasons why these techniques have become standard.

Lots of people other than Fluge and Mella seem to be using rituximab but where are the data?

Fluge and Mella are in a perfect environment to perform this kind of work. They were curious, decided to hold a pilot study, and when they had results they were allowed to run clinical trials.

Running a clinical trial in Canada, or even in the UK, is not that simple. It requires a lot of time from a team of people, preferably working on a salary and not having to see 30-40-50 patients a day on top of making the necessary calls, requesting the permissions, ethics clearance, talks with pharma and regulating bodies.

The road blocks are plenty. Money, stigma, physician time, country-specific policies, institution policies, and more.

 

[SOC]

Wasn't one of the first patients (if not the first?) a nurse from Fluge and Mella's hospital? That might be a reason why they took this more seriously.

I believe you are correct. The ME patient whose ME cleared up with Ritux was someone they believed and respected, so they: 1) believed ME is a serious illness, and 2) believed the patient's statement that her physical condition (not just her psychological state) changed. Of course they still could have let it slide if they were lesser men, but they didn't, thank goodness.

Our biggest problem is that we're not believed, so thousands of opportunities to gain information about ME are lost every year because we are dismissed at every turn.

 

[BurnA]

Fluge and Mella are in a perfect environment to perform this kind of work. They were curious, decided to hold a pilot study, and when they had results they were allowed to run clinical trials.

Running a clinical trial in Canada, or even in the UK, is not that simple. It requires a lot of time from a team of people, preferably working on a salary and not having to see 30-40-50 patients a day on top of making the necessary calls, requesting the permissions, ethics clearance, talks with pharma and regulating bodies.

The road blocks are plenty. Money, stigma, physician time, country-specific policies, institution policies, and more.

No matter what the country is, it requires effort. As @Jonathan Edwards said - they didn't sit on their arses.

They would have faced all the usual challenges of initiating a trial, raising funding and running an oncology department at the same time. Nobody put it on a plate for them and said help yourselves guys.
The point is - they did it.


Blaming the system or funding or whatever, is not an excuse if you are dedicated and believe in what you are doing.

 

[Snow Leopard]

Why didn't any of the ME physicians, some of whose patients will also have had rituximab for lymphoma, make the connection?

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).

 

[Jonathan Edwards]

Fluge and Mella are in a perfect environment to perform this kind of work. They were curious, decided to hold a pilot study, and when they had results they were allowed to run clinical trials.

Running a clinical trial in Canada, or even in the UK, is not that simple. It requires a lot of time from a team of people, preferably working on a salary and not having to see 30-40-50 patients a day on top of making the necessary calls, requesting the permissions, ethics clearance, talks with pharma and regulating bodies.

The road blocks are plenty. Money, stigma, physician time, country-specific policies, institution policies, and more.

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!