#GuestPost: taking the MS Society to task

Has the MS Society been caught navel gazing? #GuestPost 

I have in the past criticised the MS Society over various issues. It was therefore surprising when one of our patients complained to me about them as well. I think the issue he has raised is important enough to be discussed in public and I therefore asked him to prepare a guest post.  

MS Society. Together we walk

On 24th September 2017 the MS Society is organising a sponsored walk. On their website they state ‘This September hundreds of MS Superstars, our friends and families, will join forces in London to take in the sights and raise funds to stop MS. Will you join us?’

There will be walks of 3 different lengths, 6km, 10 km and 20 km. The two shorter walks are fully accessible

In October 2016 the MS Society published the following:

Exercise is known to have a positive impact in MS. As well as promoting general health, research has found that exercise can help manage fatigue and improve quality of life for people with MS. It can also improve particular MS symptoms, including cognitive changes, balance and walking.

So we are all agreed that exercise can help people with MS. The MS Society is organising a walk and they would like people to be sponsored and raise money for the MS Society.

I have one significant issue with ‘Together we walk’; I really enjoy taking exercise but I will be unable to participate. I suffer from secondary progressive multiple sclerosis and one of the problems of my MS is that I have serious foot drop. I cannot walk unaided. It takes me about 45 minutes to walk 1km which is my limit and I must use a rollator.

There are plenty of people with progressive MS who suffer from mobility issues and would love to take part in the walk. As well as participating they would like to achieve a goal. The sense of satisfaction in achieving a goal cannot be underestimated.

Surely it cannot be too difficult to organise walks of say 1km and 500m. This would allow people like me who suffer from progressive MS and have serious mobility issues to participate. We can raise money for the MS Society and achieve a goal. This is a win-win for everyone.

Yes I could go on my mobility scooter and complete a distance of between 6 and 20 km but that is not a challenge. Where is the sense of achievement?

Why has the MS Society taken it upon itself to discriminate against people who would like to raise money for the MS Society but are physically unable to walk more than a short distance? Why can’t I join in with the walk, be sponsored for walking an agreed distance?

I am Patrick Burke, I was diagnosed with RRMS in 1995 but I believe the symptoms started in 1972.The disease turned into SPMS in about 1999/2000. I took medical retirement in 2012 and setup the website Aid4Disabled in the same year. The website is the story of my MS since retirement and it also identifies a wide range of objects that are readily available and can improve quality of life. I am also a member of the Barts MS Advisory Group.

CoI: None

25 thoughts on “#GuestPost: taking the MS Society to task”

  1. I would guess the MS Society didn't have insight rather than them being consciously discriminate. Who was in the team planning and organising the walk and did they get feedback from several pwMS?

  2. Hi Patrick via Gavin's post,I agree with you walking 6km is not accessible and 'together we can walk' is potentially hurtful to many pwMS. Slapped wrists MS Society :-(Personally I harbour a secret and slightly crazy idea of taking part in a 5k race in the wheelchair category. Self-propelling is tough on anything other than a smooth surface and even a slight uphill gradient a serious challenge! The chairs alway get their own back on the runners on the downhills mind 😉 Notes to self:1.Google racing chairs for sale/hire. 2.Improve arm strength if/whilst I still can.H'mmm. 24 September? Maybe see you there? Ps yeah I know self-propelling is not fully accessible either, but then nothing is 😉

    1. Hello Annonie,I'm lucky in a strange way. I can walk but need to use a Rollator for stability and a FES to make muscles work. I plan to attend the MS walk but will be on my Travcelscoot (Google it)I like your attitude, take a look at Parallel London, https://www.parallellondon.com/. I know the 1K walk is flat but check out the other distances as well. I did the 1K walk last year and I am doing it again this year.

    2. Hi Patrick, Thanks for your reply. Great links / suggestions thanks unfortunately can't make the Parallel London event but I love your Travel Scoot! Good info on your site, have emailed you.AM 🙂

  3. Hello everyone. We saw Patrick’s blog and reached out to him to talk about his concerns about MS Walk. We had a positive conversation with Patrick last week and we wanted to respond to the questions raised here about MS Walk. The event is a great way for the MS community to come together, show support for each other and fundraise to make a difference. It is intended to be a fun, sociable day out as well as an opportunity to take on a fundraising challenge.The event appeals to a wide range of people from the MS community with a variety of abilities. We fully understand that this type of event may not be suitable for everyone, but we have tried hard to make it as accessible as possible. Many people with MS have taken part previously, across all distances, including those using mobility aids and wheelchairs.Every year we ask for detailed feedback from our participants, which helps us to continuously improve the event. In 2016, we responded by introducing the shorter 6k distance as an alternative for those who did not feel able to complete the 10k or 20k routes. We have also made all the routes circular, starting and finishing in Battersea Park. This makes travel arrangements easier and ensures that parking is available, including Blue Badge facilities. Most importantly, it means everyone is able to celebrate together, regardless of their challenge. We are also happy to talk through options with anyone who would like to complete an alternative distance.We have shared on our website that the event is inclusive and accessible, and further details are available at http://www.mssociety.org.uk/mswalk. We’re also happy to provide more information – please email challenge@mssociety.org.uk or call our Supporter Care team on 0300 500 8084. Many thanks, MS Society

    1. Thanks for your reply MS Society. Sounds like Patrick will be there 🙂 but I understand his original concern that it would be good to challenge himself to do something under his own power. I fully appreciate where he is coming from with this. May I suggest you consider renaming the event for future years to 'together we can get there' as 'together we can walk' is blatantly untrue. I understand 'walk' can be interpreted in the metaphorical sense but don't personally feel it is an appropriate in this case especially when extolling the virtues of exercise at the same time. If it offends or hurts just one person who cannot walk (literally) or power under their own steam that is too many. Thanks for reading, good to know you follow this blog 🙂

    2. Dear MS Society UK,In Canada, on the MS Society tax returns with Revenue Canada, it was found that for every dollar donated that 11 cents (or 11%) went to actually research and the rest went to fundraising and salaries. Please comment on this 89% of donated money going to everything but research. I hope this self-propagating big business hiding under the pretence of "Ending MS" is not the case as well in UK?

    3. 6k is your short route MS Society? Goodness gracious. I haven't walked more than about 500m in one go for about 3 years now. You need to start _listening_.

    4. From 2015 accounts available as pdf download here:https://www.mssociety.org.uk/ms-resources/annual-report-and-accounts-2015 (you need to look in appendices)total income £28m, amount to research £4.2m so the answer you are looking for appears to be 15%, roughly on a par with Canada.Full 2016 accounts not yet available but amount to research has been publicised as £5.7mI sincerely hope MS Society funding will be provided for MSChariot, it certainly ticks all the boxes especially the unmet need of pw progressive MS

    5. I also hope the MS Society will help with the funding of the MSChariot trial.The trial is looking for people with an EDSS score greater than 6.5. it is looking at another potential DMT for SPMS and it is allowing people who use a wheel chair onto the trial. It is using existing existing drugs These are all very good reasons to help with the costs of the trial. Pharma are not interested in this trial but people with SPMS and MS medical experts are very interested.

  4. Thank you Patrick, I can walk, thanks to 2 knee replacements and Fampyra. I can't walk as far as 10k. This is so, so, unfair. 5k, yes, with the option to rest.MSS- means NOT for people with MS. HUH! It really upsets me. In fact, it's heartbreaking. Shame on you.Yes, I'd have bought a flight and flown to London to do this. You rotten, cruel charity. 🙁

  5. I can understand Patrick's point of view,i could not walk any of the distances either and would automatically exclude myself from the event. Which i am fine with.However those people with MS who have no mobility issues could partake, and also the family, carers and people with an interest in MS. Lots of people with or without MS take part in the marathons, midnight walks etc. We are all so different as are our capabilities.There are other fundraising opportunities for those of us with mobility issues, cake break, zip-lining, abseiling to name a few. I'd happily hire a scooter for the day and going alongside those people who are walking (if anyone would be mad enough to allow me to have one that is)

  6. Let's hope the MS Society listens and gets the message. They seem to forget they are here for MSers and that means all MSers.

  7. Anyone who's planning to use crowdfunding sites most are a rip off to those who donate money, as they are businesses. Do a search there is one (or more ?) that is commission fee, no set up fees and no monthly subscriptions. More money goes to the charity of choice.

  8. Hello again – our MS Walk is an event that’s fully accessible, including wheelchair users and people using mobility aids. Over the years, we had many wheelchair users who took part and enjoyed doing the MS Walk together with friends and family. All 3 routes are fully accessible. As we said before in our comment: if someone would like to complete a different distance (either by walking or using a mobility aid / wheelchair), then we are very happy to talk through options. Regarding how we use our funds: out of every £1, 75p goes towards stopping MS, and 25p is invested to generate future revenue. In 2015, we spent over £4.2m on MS research. But as well as funding research directly we also work with other funders and organisations to drive key research projects forward, like the Progressive MS Alliance and the phase 3 simvastatin trial. We don’t just fund research though, we provide a range of services and support for our community. This includes our free helpline, providing information and financial grants for people with MS, campaigning, and bringing people with MS together at our information events and through our local groups across the UK. Our annual report has more details: https://www.mssociety.org.uk/ms-resources/annual-report-and-accounts-2015 Our Supporter Care Team is also happy to discuss this and provide more information: supportercare@mssociety.org.uk or 0300 500 8084.For the MS Walk going forward: we read through all your comments and we will take your feedback on board, of course. The MS Walk is an opportunity for the MS community to get together and celebrate – and we want the event to be as accessible as possible. Thanks, MS Society

  9. My problem with all these sponsored activities is public perception.Those of us who can't, don't, and we are thereby rendered invisible. So the public perception is that all we pwMS can walk 6km/abseil/cake bake/ride a bike across Africa.We all know what happens when you get a form of cancer for which there are no drugs – but those of us with advanced MS are invisible – and the MS Society colludes in this, they are supposed to represent EVERYONE with MS, not just the newly diagnosed with RRMS and access to DMTs – but you try finding any allusion to us – we're not exactly the poster people on the front page of the website, you have to dig.Perhaps the next MS Society campaign, rather than big grins in an orange wig, or a lipstick kiss, could show some advanced cases of MS – this is what can happen and does happen to some pwMS – wouldn't that be a novelty?

  10. I agree with Patrick. I guess I'm a bit of an old grouch, as I wouldn't go on a sponsored walk, or make cakes. or do any fund raising activity, even standing outside Sainsbury's with a tin. I probably benefit in some way from fund raising, though I'm not sure how. In fact I now feel sort of Uuuurrrgggmmm when I see those invites to go skydiving or parachuting. I never did that stuff before I got MS, so why should I do it now, when I have MS (SPMS) ? Maybe I'll start a blog, or join an existing one somewhere, that is full of all the tedious stuff with MS – like Hey you have MS, join me for a sponsored walk in Patagonia, or Hey did you see sun screen stops mice getting MS, or Hey I think you should go swimming three times every week to help your MS. No no and thrice no

  11. Have to support and endorse the views expressed in these comments.Whilst I understand it's hard to relay what a complex and damaging disease MS is, I don't think it furthers the cause for any of us for the focus to always be on our ability to move our legs! I've mentioned before on this site that my perception before diagnosis was that MS can out you in a wheelchair and that was it. I've since come to know that that is the sum of public knowledge. People are so shocked when I try to gently explain about cognitive damage, bladder, bowel, eyes, including blindness, hand function, being bed-ridden, end-stage MS etc. It doesn't help when leading charities perpetuate the idea that all of us with MS can walk distance or access distance with mobility aids or in wheelchairs. Fatigue- the predominant symptom in MS – where does that fit in??Clearly the general public are afraid of cancer and more recently dementia, but I'd hope that MS would gain more focus, especially as the leading neurological disease in the young, if the realities of this disease were truly understood. And yes we are 'fighting' the notions that we can all be para-Olympians. All organisations involved are able to play a more active role in this and let's go for a walk doesn't help! As someone with RRMS who appears superficially to be fine I feel strongly about this – again have shared before that I can't forget the reaction of a hospital registrar about a year ago who before he could stop himself exclaimed "YOU have MS!?" This is a another cruel aspect to MS in some cases and can confuse and baffle those who know/meet you. I think it's fair to say that for people to sit up and take notice the realities of MS in all its manifestations require so much more in terms of public education and therefore potentially misleading events need to be thought through very carefully before being implemented/pursued.

    1. Some very honest and perceptive comments in this thread especially JoH Thursday 5:23.I always think of it as the ghosts of Christmas past (untreated early MS), present and yet to come. We all deep down inside know what the ghost of Christmas yet to come aka advanced bed-ridden MS is and unless 'lucky' and granted a swift exit before it arrives there ain't much to stand in its way. Elephant in the room as far as MS charities go. Sincerely hoping that youngsters and newbies coming through now are getting straight onto effective treatments and able to delay/prevent worsening in time for neuroprotection and remyelination layers to be added on. As for the rest of us who've missed the boat? Off-label cladribine would be a great start and as majority of neuros seem either unaware or reluctant to take on board then MSChariot is desparately needed. MD – how much funding is needed to run Chariot? JoH – all this ridiculous lip stuff 'kiss MS goodbye' by MS Society makes me cross. The MS Society has fixed assets of £19m in property and stocks (see link above July 24 11:21)- looks to me like they're dug in for the long term, not ready for all the youngsters coming through post alemtuzumab / AHSCT / cladribine / ocrelizumab (hopefully). Certainly not serious about wanting to 'kiss goodbye to MS'.Fi – well-articulated as ever, hope you're doing ok? AM / JB (see profile and blog)

    2. We've calculated just over £4 million budget for #ChariotMS. Where will it cone from? Hopefully from MS Societies UK & US together with NIHR, and private donations. Pending your perspective it's a ridiculously small or large amount of money, however with real prospect of success, and a drug we known works in relapsing MS, and is extremely well tolerated at any stage of MS.

    3. Thanks for asking AM I'm actually going really well at this present time, and again I'm feeling the need to say that this site and the contributions of everyone on it have assisted immensely. The analogy of Dickens Christmas past, present and future is very apt! At the moment I'm maintaining so much hope for what treatment can provide both now and in the future with regards to Christmas Future for as many PwMS as possible. Hence I am so hoping that the ChariotMS trial moves ahead at a rapid pace. Best wishes with that!

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