This is a reposting.
Some good news; or should I say not bad news.
We have just received our reviewer’s comments back from our grant that was resubmitted to the NMSS. Overall they are positive. The study has now been put forward to the next phase and the NMSS will need to decide if this study is strategically important enough and whether or not they have sufficient funds for the study. I remain hopeful and optimistic.
As you can see getting funding for investigator-led studies takes time and effort. I would like to thank you for your help in completing the survey below and supporting this study. If you haven’t watched the video below I would encourage you to do so; it explains what we are trying to do to help MSers with progressive disease.
Old post:
Some of you have already commented on our new neuroprotective trial design and our proposal to use this design to do a clinical trial in progressive MS.
The design of the trial is controversial as it uses spinal fluid analysis to assess the effectiveness of potential neuroprotective drugs.
A big hurdle to overcome to do this trial is whether or not MS’ers are prepared to have lumbar punctures as part of a clinical trial. To assess this we have prepared a short education video describing the trial design and how we plan to use spinal fluid in the study. We have also tried to address some of the concerns about complications that occur with lumbar punctures so as to make the study more acceptable to MS’ers.
We now need your help; the more people who read this post, watch the video and complete the survey the better.
If you are willing to help can you please watch the following video before completing the survey below.
Some good news; or should I say not bad news.
We have just received our reviewer’s comments back from our grant that was resubmitted to the NMSS. Overall they are positive. The study has now been put forward to the next phase and the NMSS will need to decide if this study is strategically important enough and whether or not they have sufficient funds for the study. I remain hopeful and optimistic.
As you can see getting funding for investigator-led studies takes time and effort. I would like to thank you for your help in completing the survey below and supporting this study. If you haven’t watched the video below I would encourage you to do so; it explains what we are trying to do to help MSers with progressive disease.
Old post:
Some of you have already commented on our new neuroprotective trial design and our proposal to use this design to do a clinical trial in progressive MS.
The design of the trial is controversial as it uses spinal fluid analysis to assess the effectiveness of potential neuroprotective drugs.
A big hurdle to overcome to do this trial is whether or not MS’ers are prepared to have lumbar punctures as part of a clinical trial. To assess this we have prepared a short education video describing the trial design and how we plan to use spinal fluid in the study. We have also tried to address some of the concerns about complications that occur with lumbar punctures so as to make the study more acceptable to MS’ers.
We now need your help; the more people who read this post, watch the video and complete the survey the better.
If you are willing to help can you please watch the following video before completing the survey below.
It is important that you watch the video before completing the survey; questions in the survey relate to issues presented in the video. MS LP Survey: Click here to take survey or post this link into your browser https://www.surveymonkey.com/s/5JV6723
Thank you.
I had a LP years ago,How long ago did you start using the new needles?
Please email this link to anyone you know with MS (whether they are a regular blogger or not).http://multiple-sclerosis-research.blogspot.com/2011/09/are-you-up-for-having-lumbar-puncture.htmlThis not about Good or Bad News, except seeing how long these things take.It is really important that we get a good response rate to make it credible. Would you want to fund a trial that has no realistic chance of getting off the ground, of course not. That's why we need to keep it real.Therefore, it is just as important to say No (if that is your opinion) this is not a good idea as Yes it is a good idea. Don't be shy. Please Help make this a Good Turn Out
Are there any restrictions on who is eligible for the trial? Can family/caregivers fill the survey too?
I don't know whether an atraumatic needle was used when I had my LP done for diagnosis (summer this year on the NHS) but all I know is that I had such a bad experience post-LP with the headache (when, to be honest, the word headache doesn't even begin to describe the pain I was in), it would take a major decrease in the risk of developing the post-LP headache for me to ever have the procedure again. The thought of having three of them makes me feel faint!?!? I know some people have no problems at all so it would be interesting to know whether different hospitals use different needle types…. Is it another case of postcode lottery which type of equipment gets used?
I watched the video & went through the survey but abandoned it. People with RRMS cannot answer the question 'Would you be interested in participating in a neuroprotective trial for progressive MS' Should we forward the link only to people with progressive MS?
Re: "How long ago did you start using the new needles?"The non-cutting needles have been available for decades, but they are more expensive (£7.50 each compared to 25p for the traumatic needles) and more difficult to use. The operator needs to be taught how to use the needle. Therefore a lot of NHS Trusts in the UK still use the old cutting needle. There is a need for the latter, it allows you to measure the pressure, which you can't do with the non-cutting needle. The chances are if yo have a problem with an LP, particularly headache, the LP was done with the older cutting needle.
Re: "Are there any restrictions on who is eligible for the trial? Can family/caregivers fill the survey too?"No, you can complete it on behalf of your family member. If you do you can let us know in the additional field.
Re: "Is it another case of postcode lottery which type of equipment gets used?"Yes, I am afraid so. More like a country lottery. Most EU countries use atraumatic needles and have started using ultrasound guidance. We had a major problem getting our trust to accept the proposed changes, but we will get there eventually. We still need to find the finance to purchase our sonar guidance system.
Re: "People with RRMS cannot answer the question 'Would you be interested in participating in a neuroprotective trial for progressive MS'"No people with RRMS can participate. The purpose of the survey is to assess whether or not MS'ers are prepared to have LPs. The bad news is that there is evidence of disease progression in early relapsing MS; therefore this trial design is also relevant to people with relapsing disease.
I had an LP done before, and I survived!! and as a PPMS sufferer if someone said jump of Clifton suspension bridge everyday it will help I would, so it seems fine to me, so off to do the survey…………
Two failed painful, dreadful LPs which have left me so traumatised I have refused ever to have one again – which my doctor see as me being 'difficult'. I agree this is a big hurdle and I wish you luck and admire brave souls that are prepared to have an LP for research purposes but I think this is a very big ask
Re: "Two failed painful, …."Great pity; LPs are not a difficult procedure. Was the person who attempted the LP experienced or inexperienced? Did they try under screening? In 2011 the number of failed LPs should be close to zero and the complication rate very low.
We need more positive experience PLs first, Dr.— it IS a great pity, also a great TRUTH. Get on your medical community about that!
How come this post keeps on appearing?I take it the number of folks willing to undertake a lumber puncture is too few. I don't blame them. Hate LPs.
Re: "How come this post keeps on appearing? I take it the number of folks willing to undertake a lumber puncture is too few. I don't blame them. Hate LPs."The post keeps appearing as we want as many MS'ers as possible to complete teh survey. Have you watched the video yet? If not, please do. I hope I will convince you otherwise.
How are you getting on with the number of responses? Much as I wouldn't relish having a LP, I am with your Clifton suspension bridge jumper, above. Not everyday, though 🙂
Re: "How are you getting on with the number of responses?"Up to a 120; the results are unlikely to change with more respondents. However, I would like a lot more to demonstrate that a wider or large number of MS'ers supports the idea. So if you can spread the word regarding the survey I would appreciate it.
Re: "How are you getting on with the number of responses?"Up to a 120; the results are unlikely to change with more respondents. However, I would like a lot more to demonstrate that a wider or large number of MS'ers supports the idea. So if you can spread the word regarding the survey I would appreciate it.
Have you tried to get this more widely known about via eg the MS Society website, the MS Therapy Centres, the MS trust etc?
A lumbar puncture was used to diagnose my MS in 2003. The only after effect was a headache which I took a tylenol and slept it off. My experience with a LB would not keep me from reccomendng one.
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my ms was diagnosed based on clinical symptoms and lumbar puncture eight years ago. I was reluctant to have the lp due to fear but it went fine. My symptoms started in my legs and have now progressed to my arms. My question is I would be willing to undergo 3 further lumbar punctures if I thought I would get some help for my progression. The one problem is that a Neurologist well known in the field of research after one consultation suggested possible som atization disorder. Since then another well known Neurologist has re diagnosed me with progressive ms. So you can see my predicament while I am willing and want treatment I do not want to be put through that again. Do Neurologists ever admit that they are wrong and have judged wrong and harmed that person and their family.My other question is would you have to travel to London for the lumbar punctures or could they be done in your local hospital as I'm not allowed drive any more.
Re: "Do Neurologists ever admit that they are wrong and have judged wrong and harmed that person and their family."Yes, all doctors should be prepared to admit they are wrong. Medicine is an imperfect science and a very humbling profession. We all make mistakes and it is better to admit to them than not.Somatization disorder is a very difficult diagnosis to make. Neurologists usually refer people to psychiatrists to make that diagnosis. We tend to label people with the diagnosis of medically unexplained symptoms (MUS). At the moment we are waiting to hear if the study will be funded. If yes, all study subjects will need to attend our service in London. Thank you for volunteering to participate. It is much appreciated.
RE: "Medicine is an imperfect science and a very humbling profession. "THANKS! This is the first time ever I hear an active medical scientist saying this.And I really mean THANKS! Because it means that you accept reality as it is and that people are different.If you take a look on ppl as an object with different properties which interact through organs, immunesystem, blood pressure and so on, it is very hard to find the cause of a disease or how to treat a disease. This (in my humble opinion) is also the reason why some DMT's like interferons only work in about 20% of all MS'ers. You just don't know how the interaction works. In some it will, in other it wont.THANKS!