Harriet Hall CFS: Rituximab Revisited in Science-Based Medicine

[halcyon]

Why do we automatically assume someone has influenced her?

She states as much in the article. She had someone from here on PR feeding her the information. She's clearly not intelligent enough to have come across it on her own. She couldn't even figure out that there were other rituximab trial efforts without someone pointing it out to her.

 

[barbc56]

She states as much in the article. She had someone from here on PR feeding her the information. She's clearly not intelligent enough to have come across it on her own. She couldn't even figure out that there were other rituximab trial efforts without someone pointing it out to her.

Calling someone stupid instead of arguing their point is exactly what I'm talking about. It's a reflection of the writer and not on the person whom you are trying to get a message across. In the long run it doesn't win any debates and these comments are often the ones remembered and generalized to others on the same forum.

We have a right not to be disrespected but also the responsibility to not do this to others.

Tbh, Ive been guilty of this in the past and it took me a long time to realize it's counterproductive.

Im done for tonight as I need to cool off!

Barb

 

[BurnA]

Why do we automatically assume someone has influenced her? Did I misread your comment? My take is that she wrote a crappy blog not aimed to disrespect the condition of me/csf or patients but to express concerns about prescribling rituximab off lable. I feel that's a valid point but that may be neither here nor there.

I absolutely found her use of sloppy/ unscientific writing as well as the fact that she exploiting a patient deplorable and unprofessional. It's sloopy rather underhanded but that doesn't necessarily mean she's against us.

So far I have found the comments from readers very respectful with just a few that aren't, which is a hugh improvment over previous blogs. Even Harriet Hall somewhat redeems herself with one comment, but only somewhat and I will have to come back and post the comment.

My view and can only speak for myself is that some here are so wedded to the hope that rituximab will help people and that view is understandable, is not only coloring views of her but spills over to interpretation of the comments. This defensiveness at least on this board as I haven't yet seen any from patients on the SBM comments yet, is counterproductive and nitpicking as well as being available for anyone to view. Many of the comments by readers on SBM actually seem appropriate, often asking for clarification which in and of itself is not mocking us.

Going in with the bias that she must be against us since she doesn't agree with the stance that Rituximab should be available off label and then accuse her of bias is disingenuous.

This has come back to bite us before. The anger is legitimate. But if we expect to be treated fairly we need to do the same thing.

Barb

Barb,
This was a shocking article. Bringing Whitney Dafoe into it is just inexcusable. That aside, the author did not make any attempt to write a balanced article. There is nothing unfair about questioning the motives of someone who writes this nonsense. We need more questioning in general. Everybody deserves better than this. What are you afraid of that can come back and bite us ? We are entitled to express our opinions and question anything we like that warrants it.
This is not counter productive - it's called speaking up for oneself and demanding to be treated with respect. Nobody started off today with any bias against this author, but we are all well enough informed here to spot bias a mile away and many people don't like to be treated with the contempt that this author showed.

It's not about the author being against us or not. We shouldnt concern ourselves whether someone is with us or against us we just need people to report the truth and question the so called science.

Of course there are concerns about off label prescriptions, thats why they are off label. It's her "concern for the patients" condescending tone, which is so off putting especially when most patients seem to be better informed than she is on this topic.

I hope this doenst seem too blunt but if it does then blame harriet hall for putting me in a bad mood !

 

[halcyon]

Calling someone stupid instead of arguing their point is exactly what I'm talking about. It's a reflection of the writer and not on the person whom you are trying to get a message across. In the long run it doesn't win any debates and these comments are often the ones remembered and generalized to others on the same forum.

I could give a **** to be honest. I see no need to be polite and cordial to someone trying to stand between us and treatment/better understanding of our illness. I'm the one that has to live my entire existence within the confines of four walls, not her or her followers. She did an ugly thing and deserves no respect because of it.

 

[Gingergrrl]

For me when I read and re-read the SBM article, there are two different issues.

One is that OMI is using Rituxan on patients and there are details that ideally should be released some day such as:

Is it part of a clinical trial, how are these patients being selected, how many patients have used Rituxan, what ME/CFS symptoms did they have, what side effects did they have, how many have improved, stayed the same or gotten worse from Rituxan? How does OMI data compare with Fluge & Mella's? All of these are very legitimate questions and I support this information and knowledge being made public when the time is right b/c it will help others.

The second issue is that Harriet Hall took information from PR without asking for permission and implied that Whitney's condition worsened due to Rituxan which we just do not have proof is true. He is suffering greatly and he posted on this board in good faith, not that someone would use an informant and twist his words to write a sick article. He and his family deserve better than this.

I once posted something on PR re: my experience at a screening of Forgotten Plague and another website contacted me and asked my permission to re-post it. They said they would not re-post without permission, they would post it verbatim, and they would link it back to my original post on PR. They were respectful and the information they shared was nothing controversial or hurtful to anyone.

What Harriet Hall and her informant did is totally different and makes me feel sick when I read it (even though I support the OMI Rituxan data being released.) Which is why they are two totally separate issues IMO. I would personally not choose Rituxan b/c I remain unclear as to my ultimate diagnoses and with my history I am certain that I would be allergic to it.

But I am not opposed to anyone else having the chance to try it if given proper informed consent of all the risks. We are adults and we are very ill. I have tried many things out of desperation that made me worse. But I appreciate that I got the chance to try them and unless someone is as ill as I am (which I doubt Harriet Hall is, someone correct me if I am wrong) she does not understand that we are open to trying risky things in order to get some semblance of a life back.

 

[morse27]

an information about Gulf war illness , after 12 month of rituxan therapy
I can finally observe a favorable evolution of the disease with Rituxan,
but the fact to space the last two infusions highlights relapse some symptoms,
it is clear that my disease is totally different than ME / CFS ,
it induced 'squalene adjuvant some vaccines,
the frequency of infusions have to be every two months and a much longer processing time is necessary to obtain a theoretical stabilization of this autoimmune disease, classified by the WHO ICD-10 G93.4

from the Gulf War syndrom in 1991, not soldier was lucky to receive an immune suppressor as rituximab,just prednisolone and plaquenil !!

I am the first man with this disease in the world to receive 6 doses of 1 gram

It is time to think about your American soldiers doing their duty succumbed to a disease even more difficult and unsustainable as ME / CFS or other

25 years since the soldiers to such suffering continues to commit suicide, in 2013 there were 21 suicide every day,
in 2015, they are 35 !! now , many are died by car crash in relation in "coma" its possible to be inconscious in just 1 seconde, driving will be dangerous if you are now in heath capacity.....many VA specialist thought, they want just to suicide with her car, since sert 2014 , i know its not the cause , i make coma , some times 7 daily
in proportion there is no disease that causes this high level of suicides,

how much does they reast in five years? perhaps 20,000 ,in 1991 they were 250 000 to 300 000 soldiers

This is why these warriors, most having no hope and before a slow and inexorable agony have not other choice,

i knew a quebec man who developted too the same illness (gulf war syndrom) as me after the same vaccine wich contain same adjuvant , he was wonder when he meet ME:CFS patients at home, he cant understand how they can make many things every day,
as soldiers , he choice in end of 2014 after just 5 years in this disease to pass away and died with a weapon in his head !!

I like them, I share their illness, it is difficult to understand what we do not life.

I also wanted to respond to this comment of non responders to rituximab,

there is a disease that looks completely ME / CFS but with some small differences, I mean the yehuda Shoenfeld ASIA syndrome induced disease in humans and animals by the use of immunity adjuvant in vaccines but also in cosmetics injected subcutaneously see: botox, latex, silicone, oils .....

there necessarily people with this disease in the undetectable rituximab cohort of patients in all clinical trials.

Prof.@jonathan edwards
do you know how to medically separate the two diseases now?
I think the uncertainty about the benefit of rtx on ME patients probably comes from this, patients with myofascite a macrophage or Gulf War Syndrome (or civilians vaccinated with squalene) are completely identical to a non-specialist, (ncbi: gherardy et al)

One of the people involved in this discussion has lived with me a few months, she has never been able to distinguish between its natural ME disease and my EM Shoenfeld syndrome induced by vaccination with Pandemrix

there are in the world thousands of cases of Shoenfeld who receive the diagnosis of ME / CFS, including me! 3 by specialists of ME / CFS;

it was only after blood test comparative analyzes made by California physicians in their data bank blood that the verdict fell,
I had none of the biomarkers of patients ME / CFS but all those known to the soldiers of the War Gulf in 1991.

my question is for all scientist working on ME/CFS,
before recruiting patients with chronic fatigue syndrome, make sure that it is not suffering from Shoenfeld syndrome?
thank you @Jonathan Edwards and your colleague prof @Shepherd and other scientist to explain your methodology for us , thks ,
yvon , GWI civilans (since 2009) in RITUXAN therapy

 

[Dufresne]

I didn't know Whitney is "Whit". Wow! I use to really enjoy his political posts. We share the same leanings, and I loved the way he articulated his thoughts.

I hate to be an opportunist but I just learned Whitney worked on Obama's 2008 campaign. It might not be a bad idea to put together what we can about Whitney and send it off to the White House. Considering he gave his precious energy to the man he believed in; considering who Whitney's father is; considering Obama publicly promised to look into this disease...

 

[Marky90]

@deleder2k didn`t somebody email OMI asking what the response rates were, and they said it was about two thirds there as well? Seem to remember u saying that sometime, but I might not remember correctly.

 

[alex3619]

There are good reasons to wait for the phase 3 trial results from Rituximab. We don't know all the issues yet, and we will know more in 2017-2018.

Alarmist statements over rare side effects are a worry though.

However I think most doctors use off-label and unproven treatments some of the time. Most doctors also test possible diagnoses with treatments. If they got the diagnosis right, and the therapy choice is good, then things go well, both faster and at a lower cost. If they got it wrong they choose another drug, or make a different diagnosis, or try a different protocol for the therapy. This is intrinsic to medicine as we know it today.

Rituximab remains an unproven treatment. That does not mean its an unpromising treatment however.

The issues here range from duty of care to informed consent. Using Rituximab is risky right now, but there will always be risk even after the phase 3 trial results are in.

Arguing that no data is public and so its not valid treatment may be spurious. This is closely tied to OMI, and it has a database project, so such claims may proven unfounded over time.

What is being left out of the debate is patient choice, and patient need. Many of us have extreme need. With sufficient information many will want Rituximab. With enough care in delivery I do not see this is a problem. Devaluing drug therapy can result in dismissing patient suffering.

 

[Snow Leopard]

The blog post has some good and some bad.

Use of anecdotes without permission is not cool!, having little knowledge of the Rituximab research (why not contact the researchers and ask for a bit of perspective before forming conclusions as to why the open label trials were done)?

That said, I think Kogelnik's actions of providing the drug outside of a trial is irresponsible. I think at the very least an open-label, trial with defined outcomes was warranted.

But still, poor Whitney.

 

[EtherSpin]

The bits about Whitney Dafoe seem really opportunistic. Look at anyone who got vaguely as severe as Whitney and you could point the finger at a random treatment (in the 50-100 treatments we all have a go at) during worsening of symptoms (i.e. a long process over many years in lots of ME/CFS cases) and say "ah ! that there! the D-ribose looks like it might have caused this person to gain cognitive problems or .. some other staple of ME/CFS!"
its early days with Ritux, we don't know if people who get no result need further treatment,we don't know how much is the best dose or how often.

 

[Kati]

The blog post has some good and some bad.

Use of anecdotes without permission is not cool!, having little knowledge of the Rituximab research (why not contact the researchers and ask for a bit of perspective before forming conclusions as to why the open label trials were done)?

That said, I think Kogelnik's actions of providing the drug outside of a trial is irresponsible. I think at the very least an open-label, trial with defined outcomes was warranted.

But still, poor Whitney.

Hi @Snow Leopard I really liked most of your post and I agree however I feel you are being harsh with Dr K. The truth is that all of our experts are doing the best they can in treating patients. All of the drugs they are using are off-label, from Ampligen to Valcyte and Valtrex and whatever Dr Enlander is using, to LDN and what Chia is using (oxymatrine, and other very off-label drugs)

Patients congregate to a certain physician according to what treatment they have to offer, what level of risk they are willing to accept, How much money they have, amongst other. Being treated by a certain physician does not guarranty any success, but in some ways, these guys are supported by the patients. It's how it works right now.

The alternative? Following Cochrane review and enter group therapy CBT and GET.
Methylation protocols, you ask? Nothing validated, all theories. Nothing validated.

What is a patient to do? Everyone has a choice. Some will go the natural route. other will buy drugs off shady online pharma and experiment with drugs. Others decided they would go the medical route.

A particular doctor may not be your style. But please, don't shoot them, because these very physicians are not only helpful to other, they are essential or pivotal in their journey.

 

[barbc56]

@Gingergrrl

For me when I read and re-read the SBM article, there are two different issues.

One is that OMI is using Rituxan on patients and there are details that ideally should be released some day.

The second issue is that Harriet Hall took information from PR without asking for permission and implied that Whitney's condition worsened due to Rituxan which we just do not have proof is true

.Bingo! Well said!

@Snow Leopard

But still, poor Whitney.

I didn't connect the two names either. Like so many others, a tragic story. Unless he gave his permission which doesn't appear to be the case, using his story, making assumptions based on anecdotal information to analyze what is going on was lower than low There were better ways to make her point without stooping to this.

I wrote to the SBM editorial board, their contact information is listed, that while Dr. Hall's blog made a valid point it was presented in a way that is the antithesis of what SBM is suppose to represent and unfortunately this resulted in the point being lost. The end doesn't justify the means.

I would have written in the comments and may still do this, but with so many I thought it would get lost.

Who knows if I'll get a response as it's a busy site. But it was worth a try.

Barb

 

[L'engle]

A particular doctor may not be your style. But please, don't shoot them, because these very physicians are not only helpful to other, they are essential or pivotal in their journey.

It's OK for people to voice their views about what one doctor or another is offering and whether they agree with it. That doesn't threaten anyone else's right to choose their own treatments.

I agree with many of the points you make about treatment but I don't think the post you are criticizing makes statements that merit all those responses as counter arguments.

The alternative? Following Cochrane review and enter group therapy CBT and GET.
Methylation protocols, you ask? Nothing validated, all theories. Nothing validated.

No, SL didn't bring up methylation protocols or other unvalidated theories.

While I agree with many of your points, framing them as a refutation of someone else's post isn't fair when the other poster didn't refer to those issues to begin with.

 

[alex3619]

you could point the finger at a random treatment

This report is not even up to the mark for bad science. Association is not causation. Its fair to argue that Rituximab is unproven, but using unconfirmed sensational anecdotal evidence to put emphasis on a case is what you expect from a Shock Jock reporter.

Science has to be judged on the science. Medical issues have to be considered on the merits of the specific case, as well as the larger evidence base.

If a patient has been harmed unfairly, then they have the right to take various actions on their own initiative. There are some caveats to that, but no evidence is reported that the caveats apply here.

We are all at risk of attributing improvement from some therapy just because of association. However it works the other way too. Decline from treatment is not always due to treatment but just association with another event. These things require careful analysis, and ongoing medical monitoring. This is particularly a risk when the underlying illness is known to include major changes over time.

One known risk that worries me about Rituximab though is that there are a large range of infections that preclude treatment, and not everyone has been tested for them, or tested repeatedly to rule out false negatives.

Allergic reactions are a known risk, and typically mean the patient can no longer be treated with Rituximab.

 

[Jonathan Edwards]

@Gingergrrl


.Bingo! Well said!

@Snow Leopard
I didn't connect the two names either. Like so many others, a tragic story. Unless he gave his permission which doesn't appear to be the case, using his story, making assumptions based on anecdotal information to analyze what is going on was lower than low There were better ways to make her point without stooping to this.

I wrote to the SBM editorial board, their contact information is listed, that while Dr. Hall's blog made a valid point it was presented in a way that is the antithesis of what SBM is suppose to represent and unfortunately this resulted in the point being lost. The end doesn't justify the means.

I would have written in the comments and may still do this, but with so many I thought it would get lost.

Who knows if I'll get a response as it's a busy site. But it was worth a try.

Barb

That seems a very sensible measured thing to do barbc56. I am actually thinking that in the UK Dr Hall's blog might well be the subject of a disciplinary hearing at the General Medical Council. Suggesting on a public site a serious diagnosis for a private individual who can be identified through previous publicity almost certainly breaches rules of professional conduct. On a wider basis, using exactly the anecdotal scare tactics that the target group (alternative or 'non-scientific' practitioners) uses seems to completely undermine the SBM position. Also imbalanced accounts of drugs like rituximab can cause significant distress to people using the drug for licensed purposes.

Looking at the SBM website I am also still concerned that there are other players in the background here. There is something spooky about the 'skeptics' movement. A bit like the Guardian I worry that useful whistleblowing is only a short step from busy-bodying from self interest. Somebody is making money and a career out of this stance. Organisations tend to attract financial support from strange bedfellows. The main contributors tend to say sensible things, but like Guardian journalists not always based on firm grounding.

It will be interesting to see if you get a reply.

 

[Snow Leopard]

Hi @Snow Leopard I really liked most of your post and I agree however I feel you are being harsh with Dr K. The truth is that all of our experts are doing the best they can in treating patients. All of the drugs they are using are off-label, from Ampligen to Valcyte and Valtrex and whatever Dr Enlander is using, to LDN and what Chia is using (oxymatrine, and other very off-label drugs)

There is a big difference - the cost and risks of Rituximab are far higher. Surely some transparent data collection (ongoing open label trial) is not too much to ask?

 

[Jonathan Edwards]

For what it is worth I think the German and American experience with rituximab in ME/CFS has been useful to the research community. I would have liked to see a more formal prospective approach and regular documentation through publication, but things are not always as easy as it seems. I remember showing my plan for the first trial in RA to one of the wisest of physicians in the UK - a hero of mine. He said 'that is a waste of time'. I believed that he was wrong and he turned out to be wrong. He was kind enough to admit it when we met again ten years later. Development of drugs often involves insoluble moral dilemmas. Somebody has to think through the best way forward. I have reason to be critical of Dr Kogelnik's tactics, just as my physician friend did of mine, but what we do not need is somebody with no knowledge of the subject sticking their nose in.

 

[adreno]

Often there will be no clinical trials, unless someone has pioneered off-label use of a drug first. Sometimes you have to take risks in life to get anywhere.

The world is a dangerous place. We can either deal with it, or wear both girdles and suspenders all the way to our death beds.

 

[MeSci]

Uhhh, well of course. that's exactly how I became an expert on temporal-spacial mechanics--with a specialty in black hole specific non-linear gravitational anomalies.

You too? We must chat sometime!