1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Promote Rituximab trials and treatment in the UK

Discussion in 'Rituximab: News and Research' started by currer, Nov 10, 2011.

  1. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    769
    Hi

    I would like to invite ideas from the UK members as to how we can promote Rituximab and research into immunomodulators as a therapy in the UK, and to use this medical breakthrough to get the old psychiatric paradigm finally discarded.

    We need to act politically to publicise the opportunity created by the Rituximab study.

    Any ideas anyone.

    Writing to our MPs ...writing to the DOH....setting up a meeting with the DOH...what can we do?
  2. snowathlete

    snowathlete

    Messages:
    1,991
    Likes:
    1,960
    UK
    writting will work if you are determined, but it takes years to get the result.

    the other problem is that most people with the illness cant, or wont, take action. so its a small group trying to make a big impact. You have to do something compelling and out there to get attention.

    Fathers for justice is a good example. Im happy to dress as a large bright, round pathogen and climb a roof in central London - anyone else willing?

    Street Art is another idea i have (look up banksy and space invader on google). It would require people in several cities in the UK to agree on a logo and coordinate to paint it (usually under the cover of darkness) and get some attention in the media and social networks.

    Those are my best ideas.
    ukme likes this.
  3. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    This is exactly the sort of campaign that the MEA or Action for ME should be getting behind. It would have to be backed by influential people invested in the physical paradigm. Ah. There's the rub. Our charities sit on the fence. Perhaps Countess Marr/Prof Hooper/even Findlay/who else? could have some words of wisdom. I'll help, if we can find a chink of light.

    There will be no shortage of subjects volunteering for a clinical trial, I am sure.
  4. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    769
    I am prepared to write to my MP and the Countess and the DOH if necessary.

    However I feel we could achieve more as a group. If anyone wants to form a group for this purpose, can they PM me please or add to this thread?

    I am talking about challenging the political inaction here, not getting suidetracked into arguing about the effectiveness of rituximab.

    The Norwegian initiative needs to be followed up and that will take political will.
    We need to get out MPs involved as a first step.

    This is something AfME could do but we all know they never will.
    Their medical advisor Alistair Miller attacked the Fluge and Mella study in PlosOne.
    What kind of patient charity is that?

    Some of the truths about the way ME has been managed and controlled need to be publicly discussed.
  5. Jenny

    Jenny Senior Member

    Messages:
    1,223
    Likes:
    172
    London
    It might be worth contacting the Breakspear Medical Group about a trial. But that's likely to mean patients paying for the drug themselves and not many of us could afford that.

    I wrote to the Royal Free asking if they would consider a trial but of course they won't do anything until others have done more trials - bit of a Catch22.

    Jenny
  6. snowathlete

    snowathlete

    Messages:
    1,991
    Likes:
    1,960
    UK
    I think that is very sensible. I am in if we can get a large enough group of us together, and agreed on what to do.
  7. redo

    redo Senior Member

    Messages:
    830
    Likes:
    89
    I'd say first get a feature article out in one of the large newspapers, preferably co written by a ME organization. You cast light on the magnitude of the problem, both what the disease costs UK on a yearly basis, but also the human cost. And propose that the UK government must act responsibly after that. We can't afford to not turn this stone. And the UK government should give money to research.

    When that's in place, you organize messages to the MPs in a large scale. Facebook works great for this, as journalists read there, and so does the MPs and other politicians. Than you try to organize a meeting with a politician able to take decisions and allocate funds (or someone close to such person), and than push to make them say yes. After all, such a study is just pennies compared to what ME costs the country in lost taxes, medical bills, money to be able to live for the ill, and of course the great human cost of being ill.
  8. Vitalic

    Vitalic Senior Member

    Messages:
    108
    Likes:
    46
    Should we not wait for the results to be replicated at least once before potentially setting ourselves up for another disappointment as well as handing the psychiatric school some nice easy ammunition if the results somehow turn out to be erroneous.

    Are you really as naive as to believe there will be or could even be a paradigm shift on the back of one small Norwegian study? As profoundly important as that trial might turn out to be I don't think it has reached the critical mass required to change the state of affairs in this country and might even end up doing more harm than good.

    I don't want to sound defeatist but you aren't going to win this particular fight at this stage, you are going up against a deeply entrenched establishment tied to a model that has existed for decades, it's going to take more than a few letters to MPs to change that. The only point at which I can see us having a political platform to build upon is if these results are replicated and validated, and some piece of evidence is found that ties the results to a theory or hypothesis, at that point the evidence will be strong enough to really organise a push back against the status quo in the UK, but until that point it seems quite infeasible to me.
  9. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    26
    Rituximab

    Is the ME/CFS community playing with fire?
    http://www.flimecfsforum.com/forum/index.php?f=35&t=517&rb_v=viewtopic

  10. Vitalic

    Vitalic Senior Member

    Messages:
    108
    Likes:
    46
    I suspect the consensus within the severely affected portion of the patient community would be that the risk of viral reactivation is outweighed by the potential of complete remission, so I'm less interested in how the psychological school might use the risks and side effects as counter-arguments. It seems to me the central issue is whether the effects of Rituximab are having an impact on the underlying pathology of CFS. If this can be experimentally demonstrated by a combination of positive trials and studying the mechanisms involved that trigger the delayed improvement in symptoms, then it would be enough to establish grounds for a genuine political push-back, at this stage I feel it is too early because the science isn't solid enough yet and would simply represent a repeat of XMRV if the original study was found to be flawed, as unlikely as that may be.

    I know the original poster was less interested in the efficacy of Rituximab and more interested in changing political will, but if you want to use Rituximab as your political vehicle to achieve change you better make sure your vehicle first has a solid engine.
  11. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    769
    The last two posters have illustrated the political problems we face.

    Has anyone wondered why the Norwegians were able to take the opportunity offered by a small study and extend it into a larger initiative to look at the biological basis of ME and our governments will not?

    The Norwegians did not demand the degree of proof required to be certain - precisely because they are doing TRIALS in order to research the drug.

    Certainty is not required in order to fund research - that is precisely why it is called RESEARCH!
    Our governments can and have blocked research indefinitely into ME by raising the burden of proof ever higher and then falsely using "lack of proof" as a bogus reason to block research.

    But I do not want to discuss Rituximab.

    We need to bring to light the entire fraudulent process whereby valid research into ME is never done, and the political reassons for this. It is harder with the evidence of the rituximab study, for excuses to be found not to do research and this is why we need to take the initiative now.

    It is the politics of ME that has held us back, just as it has for autism and gulf war syndrome, and this is what needs to be discussed and brought into public debate.
  12. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    26
    Politics of ME?

    Respectfully Currer,

    Sure you do. Is there any other way to interpret a thread titled "Promote-Rituximab-trials-and-treatment-in-the-UK"? We are discussing a class of drugs that can and do kill people. Serious medicine. All we have is one very small study that has not been replicated/validated by any other researchers. Biologic drugs that deactivate antibody-producing B cells can have profound consequences to the immune systems of patients.

    Rituximab may not even be the most effective/safest drug in this drug class:
    http://www.flimecfsforum.com/forum/index.php?f=35&t=523&p=863&rb_v=viewtopic#p863
    http://www.ncbi.nlm.nih.gov/pubmed/19463076?dopt=Abstract

    Since lives are at stake in any ensuing research/drug trials, I submit that politicizing or trying to direct the outcome of research into this class of drugs and any association to ME/CFS should not be done. Instead, the best and most careful science is needed, that that is how things should proceed. Leave this one to the clinicians and the scientists. We don't need newspaper ads, street protests, etc. at this point. It is really time to back off and go slow and carefully on this one.
  13. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    769
    Levi, respectfully - you have missed my point.
  14. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    26
    Currer,

    Perhaps so. But I can at least relate to the frustration you are voicing about the psych lobby and the obfuscation of the biological basis of ME/CFS by putting forth the cause as functional/psychological instead. And in particular how that has had the practical effect of limiting UK patients treatment options and dignity, which is indeed a serious political problem. I just don't think that cancer drug research is now, or ever will be the answer to the political problem.

    The cause of ME/CFS could be rabies virus, and there would still be psychs accusing the patient of "somatizing":
    http://archneurpsyc.ama-assn.org/cgi/reprint/50/6/715.pdf

    The way ahead is persistence. Start curing patients with a therapy that works and is backed up by solid science, and the politics will eventually sort themselves out.

  15. redo

    redo Senior Member

    Messages:
    830
    Likes:
    89
    I am not sure if naive is the right for believing in the possibility for a paradigm shift. Believing it may happen just like that, without any activism, yes. But believing it could happen, no. Just take a look at what the Norwegian health officials have done. They have apologized. That sounds like the first step towards a paradigm shift to me (and the apology didn't come free, there's almost always activism involved).

    The most important reason for kick starting studies, for the patients, is the possibility to take part themselves. The situation really reminds of me this cartoon I've seen:


    [​IMG]

    It's years and years until something happens if sitting on the sideline. I guess many patients would have no problem accepting a huge death risk to be given a shot at life. Not because they're unable to do a risk/benefit assertion. But because the situation is so unlivable that they'd rather jump out into the great unknown, than spend more years with ME. But -- there is no huge death risk. The drug is safe enough for RA patients. And it's been used on hundreds of MS patients.

    The only way I could see it backfire, would be if someone got some funds together, got a doctor halfway interested, and decided to do a blinded trial. If that's done halfhearted, it could do much harm. Open studies, showing the drug could work, in a patient group from another country/continent, with other researchers would help. More MDs would get interested, the buzz would get bigger, and some patients would (hopefully) benefit from being allowed part a trial.

    "I suspect the consensus within the severely affected portion of the patient community would be that the risk of viral reactivation is outweighed by the potential of complete remission" You're right. And, we don't need a consensus. Some might feel it's the right thing for them, others not. It's all optional. The life situations are really different for different people. With RA, the drug is reserved for those with moderate to severe RA, so not all groups are included. And they must have tried other therapies first.

    How they got the national initiative to make a larger trial years and years from now? As I've understood it, to has to do with years old campaign promises by politicians to take ME seriously.
  16. redo

    redo Senior Member

    Messages:
    830
    Likes:
    89
    The drug is a lot safer than it's reputation of being. It's been around since 1986, and it's been used in thousands of patients with various syndromes close to ME. I trust patients to decide if trying something which is unknown is best for them or not. Informed consent.

    It's actually been two trials. One tiny pilot of 3 patients, and than the small double blinded RCT of 30. I agree with what you're saying that other drugs might be more right :thumbsup:. Although other drugs might be more of a unknown, I think we should seriously look at drugs which benefit RA patients, and MS patients. If someone with ME have improved with those drugs in the past, I guess most doctors would have thought "ahhh, I wrongfully diagnosed them with ME, they really have RA/atypical MS", when the fact really is that some of those drugs might help (as we know Rituximab can do, which is used in both RA and has potential against MS).

    The need for media pressure really depends on what message which is attempted to get out. Funding for Rituximab trials? Stopping the psych people? Funding for ME as autoinflammatory/autoimmune disease? Political promises to take ME seriously?
  17. snowathlete

    snowathlete

    Messages:
    1,991
    Likes:
    1,960
    UK
    You say you dont want to sound defeatist, but then thats exactly what you go and do...:rolleyes:
    ...Yes, its hard, but to say we cant start making change is exactly why change doesnt happen - and i know this because i work (or did before i got ill) in change management. The main reason change does happen is because people believe it cant happen. Thats the main power that the opposition to any change has - the weak attitude of the other side.

    Your quite right that we should not bat solely on the Rituximab thing though. I think the much stronger point is that Norway has taken a different stance, and thats what we should ask the UK government to do. Norway did not appologise just on the weight of the Rituximab study, campaigners over there have been witling away at the Norway government for years.

    This is why the change happened in Norway first, because people did not take the attitude, we cant win till we have something so solid that its irefutable. If thats the case, then we might as well go home and wait...In fact, getting your voice in early is very helpful, because when someone more solid comes through, perhaps from replication and further research with Rituximab, perhaps something else, you are already engaged with the right people when you suddenly become ready to talk seriously, and it helps those people feel an urgency because they realise all of a sudden that its overdue. And that is how it happens - all of a sudden. When someone changes their mind from one view to another, there is a certain something in their head which switches, like a see-saw, and early input does form part of that.

    I think we need to be careful here. Your right, but the important thing to do is to narrow the topic. If we bring up everything they havent done and why, then they will have lots of places to hide - thats what they have done for years. People hate it when you focus on one thing and dont let them riggle to an area they feel more comfortable on. So we need to decide where to focus the attention.
  18. Vitalic

    Vitalic Senior Member

    Messages:
    108
    Likes:
    46
    Some good points have been raised. I agree that the burden of evidence is disproportionately high for this particular illness, the evidence that it is fundamentally a neuro-immunological disorder is indisputable at this stage and that *should* be enough to get the ball rolling in terms of proper research that isn't limited by the bio-psycho-social model. My main point is that we shouldn't use the Norwegian study as the key piece of evidence to make the case, there is already enough well established evidence to make that case without using something that has the potential to backfire later down the line.
  19. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    769
    http://www.mecfsforums.com/index.php/topic,10036.195.html
    Just out of interest has anyone on this forum seen this? (It is a youtube video on reply 204.)

    Thanks for the responses everybody. To put the record straight, I do not think Rituximab will be a "cure".
    (I still think a retrovirus could be the cause - I do not think Drs Mikovits and Ruscetti cannot recognise MLVs.)

    What it shows is that we incontrovertably have an immune condition that responds to medical intervention.

    This fact is what we need to ensure is emphasised.

    If the Norwegian government can treat their ME patients humanely why should we accept anything less from our own?
    Navid likes this.
  20. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    26
    Use ME/CFS patients as controls - Rituxumab research?

    This thread has me wondering about the strategy of using a small number of well characterized ME/CFS patients as partial controls in the ongoing RA and MS studies of this class of drugs. Of course, in addition to the normal number of healthy controls. This would be a superior strategy to full blown ME/CFS Rituxumab studies because:

    1) Expectations and hyperbole would be better managed and yet scientific data could gradually accumulate.

    2) Costs could be shared and minimized because the ME/CFS aspect would be only a portion of the study.

    3) Credibility challenges would be minimized since the main thrust would be upon diseases that are not as controversial as ME/CFS

    4) Probably most important; the focus from the cooperating ME/CFS clinicians and scientists could focus on the cohort selection, and informed consent to the exclusion of other priorities. Likely subset classifications could be refined and tested in the context of using ME/CFS patients as controls for research into other diseases with a biological basis.

    5) The work and contacts for the initial effort could be expanded and built upon for future research into other diseases with a biological basis, so the ME/CFS community would not be caught yet again with all of its eggs in one small basket.
    redo likes this.

See more popular forum discussions.

Share This Page