“We did our 4th MS Roadshow last Saturday at the Chilterns MS Centre. The Roadshows are meetings we do outside of our annual MS Research Day. The purpose of the Roadshows are to take our research into the community. Our focus this year has been on progressive MS trials, both disease-modifying and symptomatic. The aim is to present our research and what is generally happening in the field of MS research. We actively encourage MSers to participate, or at least put themselves forward, for clinical trials. Without volunteers for clinical trials we will never move the field forward.”
“At the end of the meeting one of the MSers who was in a wheelchair stated that after our presentations she felt, for the first time, that the research community was taking progressive MS seriously and that she felt confident that a breakthrough in progressive MS was just around the corner. Our presentations were the most positive she had heard in relation to progressive MS; she was convinced by our arguments that we could really do something for progressive MSers. She was in a wheelchair. She was particularly impressed that I made the statement: ‘because you are in a wheelchair why shouldn’t we try and delay further disease progression and protect your upper limb function and your ability to swallow and speak?’.”
“This sentence subsequently bounced around inside my head all weekend. Yes, why shouldn’t we try and preserve upper limb and bulbar function in wheelchair-bound MSers? If our length-dependent axonopathy hypothesis is correct and the same mechanisms are driving upper and lower limb progression why shouldn’t we enrol MSers in wheelchairs and include them in trials with the aim of preserving upper limb and bulbar function? It has become very clear to me based on the comments in relation to my destigmatizing the wheelchair post that MSers need to have some hope beyond EDSS 6.5. If we exclude wheelchair users from all progressive MS trials we destroy any hope they may have of preserving their independence in the future. As a community are we prepared to simply condemn wheelchair users to the face the ravages of the disease without any hope? I therefore propose exploring whether or not we can power a trial to look at upper limb function as a primary outcome for progressive MS trials. May be we can design the trial so that we can assess upper limb function using a web-based keyboard task that MSers can complete at home? This would mean they could do most of the assessments at home and avoid, or at least reduce, tiring journeys to the trial centre.”
“If you have a moment could you please complete the following survey on this issue?”
Be warned, this is an angry post. I find the paucity of ambition in MS research staggering – not just Team G (and to your credit you put your head above the parapet). The lady in the wheelchair may have been impressed by the research focusing on progressive MS, but did she ask when it will benefit her? The word trials means many, many years. Then, if successful, there's licensing, funding, availabilty… The timescale are all in the name of safety…. i'm guessing loosing your upper limb function and ability to swallow is not very safe. If I was in a wheelchair I'd want the hope of being able to walk again. I see that the Tische MS centre are running a stem cell trial and reporting some early interesting resuls e.g. increase in leg strength. I find it incredible that the current offer by Team G is that "we may be able to save your ability to swallow". I wasn't at the meeting so don't know what details / timescales were provided. But real hope for progressive MSers is to be able to stop progression now, and perhaps encourage some repair in the next 5 years. While research blogs and MS societies always note that MS research is steaming ahead and there's never been the hope there is today…. I heard the same thing a decade ago. For the record, Inadmire Team G dedication ti research, this blog etc. this is not a swipe at Team G, rather that sad position people with Progresive MS find themselves in – living on words.
Yes, you are partly correct. Safety is an issue; we have to comply with the regulations. This is an issue that needs to be taken up with the regulators. HIV activists managed to get new legislation enacted. I note cancer patients and their families are trying to do the same. Please note scientific process takes time; it is like waiting for an oak tree to grow and mature. If you don't plant the acorn now you will never see it mature. At present the progressive MS oak tree is still a juvenile; it has healthy branches that seem to be sprouting well with good sized leaves. With time it will mature and produce a bumper crop of acorns. What worries me most is that the cynics and nihilists want to chop it down.
Upper limb function is vital. The strength of my arms is making up for weakness in my legs to a great degree – I walk with hiking poles. And upper limbs are vital to essential functions such as eating and bathing. Although I have accepted the loss of my walking ability to a great degree, I cannot imagine life without the use of my hands to type, write, draw, tend to my beloved plants, hold a pair of binoculars for bird observation, and so much more. Losing strength in my legs is very bad. Losing the use of my hands would be utterly and completely devastating.
While I agree with some of the spirit of Anon 7:27's post, my frustration lies with the fact that progressive research was not begun many years ago, that the concentration seems to have almost entirely been on relapsing remitting MS. But at least the oak tree IS now growing. And I would rather have treatment based on good science than good/pot luck.
You're right, for far too long MS research was hijacked by the immunologists, who merely saw MS as an inflammatory disease and research was focused on stopping relapses. The neurodegenerative component was ignored. This has now thankfully changed and the oak tree is growing but it needs careful nurturing.
And it is researchers like you who are helping to drive this change. Thank you.
And rest assured that we (and others) will continue to drive this forward. Thank you.
I would have loved to have been at the event.I know what my late wife Vicki would have said.1991 she was told there is nothing that can be done there are no drugs that can help your type of MS, you have to get on with your life.Fast forward to May 07 Vicki was asked if she would take part in a video Living with MS for the OU to be used in training for health care, she jumped at the chance to raise awareness of MS and independence. So in June 07 the team from OU media arrived and spent the day filming asking questions, drinking tea and coffee, and finally left at 6pm. Vicki was exhausted physically and mentally, so an early night.Vicki had been a full time wheelchair user since 1998, then a powerchair from 2000, she might have lost use of her legs but that wouldn't stop her doing what she wanted.She self catheterized until it became difficult as her hands didn't work properly she was confined to bed January 08, became double incontinent, 2010 Vicki lost use of her left arm as she was left handed had learned to use her right hand, 2011 she could no longer use her right hand or arm, which became fixed bent at the elbow. All the time finding it difficult with speech and swallowing, her weight dropped to just under 40kgs and finally July 04 she had a peg tube inserted. Slowly she put on weight all her meds and food via the peg. Speech more difficult also vision, because of spasticity he left leg was fixed 40% and given Botox injections that helped at first and over 2 years, Vicki was due a review April 2013, sadly she passed away in the March after spending 15 days in hospital. Some MSers and people say that MS is not fatal you don't die with an illness like that, it may be life changing. Well sh*t happens, Vicki's death certificate states the cause as 1a Type 2 Respiratory failure b Pneumonia c Multiple Sclerosis 11 Impaired Swallow, it certainly helps.In 1995 Vicki was researching via books phone, then one morning on TV was a woman with MS, her name Carrie Loader quite by chance found that a combination of B12 injection, an anti depressant and Phenylalanine helped her mobility. So Vicki asked her GP he said no, but after much pestering from her he relented, with in a couple of months she could walk without crutches go up and down stairs do natural things, I have to say it only worked 4 weeks then back to reality.I think that as time goes on people with a chronic Progressive disease should be allowed to sign a document to waver any issues that may or might not happen to allow them the opportunity to try any drug that is at the testing stage. Who knows when and I, People must have a say and the choiceThank you
I agree with your point that people with chronic progressive disease should be able to try a drug (with medical support). I am so frustrated that I depend on medics whose hands are tied and who have little interest in exploring what might work. This is a complex condition and we do not say that a certain drug provides a cure; no – our bodies respond so differently to various remedies. A simple approach may reduce a symptom for someone which could make such a difference for them. I wish that cannabis based medicine were available legally in the UK as it is in the Netherlands (they have an office for Medical Cannabis). How sad that the beneficial effects of Carrie Loder's treatment only lasted 4 weeks for you wife – she did well to try it. I read Carrie's book 'Standing in the Sunshine' back in the mid 90s. So yes, we need more freedom to see what works for us, and I for one am willing to sign to take responsibility.
Prog G,You once put up a pyramid of treatment targets. Anti-inflammatory at the bottom, then neuro-protection, then re-myelination and neuro-restoration at the top. How would you rate the progress with the three above anti-inflammatories? I see lots of neuro-protection and remyelination trails, but results don't seem to be announced or are rather vague e.g. anti-lingo for ON. Will we ever see progress in getting these treatments to market?
Yes but it takes time. A couple of years ago there was nothing above the anti-inflammatory mark
Happy you think that ProfG is progressive in his thinking…maybe ProgG will stick 🙂
Absolutely yes!!!! I completely agree!!! As someone in a wheelchair it is so disspiriting to be excluded from every trial.Upper arm function is so much more important to me that mobility right now. I'm in a wheelchair for mobility – it's sort of taken care of – but there's no "wheelchair" for your arms. Once that function goes there's nothing to help.I have a friend who can only move the fingers on one arm. The other arm started spasming last week and got stuck across her throat. She couldn't get to her emergency call because the spasming arm was blocking her. Any action that supports people like her and people like me who are at an earlier stage is desperately needed, including earlier access to potential treatments through trials.
Hear, hear. These questions are kind of stupid once you're in a wheelchair. At that point, upper limb matters 100% and is what keeps you out of a nursing home!
I now realise more than ever that a one way ticket to Switzerland will be the get out clause for me. When I was diagnosed the neuro stressed how he had patient who were still playing tennis after ten years since their diagnosis. However, MS at its worse isn't far off MND. The idea of being trapped helpless in a body that doesn't function is a living hell. Are you brave for staying the course or brave to get out with your dignity? Can't believe that with such a potentially hellish disease, we aren't offered anything to give us hope for a better future. The solution to MS is always another trial. We could all do with some positive news on the progressive MS front. When you see the '000s of MS researchers at ECTRIMS / ACTRIMS, it beggars belief that people are still facing the grimness of this disease in 2015.
Well I'm not going to lie this is all majorly depressive, not only the attitude but thre reality of what the later stages of Ms are likeSomething has to be done and quick, patients should be allowed to use on a named patient basis on the proviso of an unmet needBut then what drug do they try? Buotin? Carbamazepine, Raltegravir, stem cells?It's an impossible choice and just wrong that we can send people to the moon and yet we know little about a disease that has plagued people for years and robbed families of loved ones
Years ago I had a relapse and lost the use of my hands. I wasn't in a wheelchair, but it made my life hell. I got most function back, but not completely. I have an array of gadgets to help me. I don't know why more priority isn't given to upper limbs, everyone seems fixated on whether we can walk or not to assess our disability.
Exactly. An inability to walk *alone* won't take away most people's independence. Not being able to use your arms/hands will make most activities of daily living inaccessible to you.