Friday, 16 September 2016

PwMS plea for ECTRIMS

#ThinkHand

Anon said

"Dear Bart and all of the MS doctors, drug companies, support groups, bloggers etc. WTF!"


"Stop wasting time and money, why are you retreading the same ole BS. 9 hole peg test really?" 

"Somedays I go slow some days I go fast, honestly it depends on how the nurse treats me that day. God, if I read one more study about a test on drugs that have been out for years, I will kick your ass. Oh wait I can't lift my leg". 

"Lets face it MS patients are cash cows". 

"I think this site is good and maybe you are trying, but I am dying". 

"So dear drug comapanies who go home to there happy healthy familes, take them out to dinner pull out their Black American Express card out.....think of us".

"Think of those backs your gain is on. The ones who look for hope on the internet open the checkbook to negative numbers. Who try to walk to the bathroom and make it time. Who get up each morning and think it's a nightmare, but then it's not. It all begins again. So enjoy your meetings and your dinners and your conference. I will go to bed, I will dream of walking and running and wake up and then it all begins again. MS, its still there".

Dear Anon
If we look at the data presented yesterday about the effect of  a drug on progressive MS, the effect on leg function was slowing dysfunction by  20% , but slowed loss of function of the hands by 40%. In another study there was no effect on loss of leg function but again hand function was saved.

If the focus moves from legs to hands it means that people in the later stages of their MS are not forgotten.

As to your view about ECTRIMS.

As part of continuing education and keeping up to date, people have to go to meeting and talk to each other

6 comments:

  1. What medicine are you referring to that slowed leg vs. arm function 20% and 40% respectively?

    Thanks

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  2. To be fair, I go to CPD meetings too and I share relevant information with my clients. My firm has a blog which updates news in profession from time to time.

    And yet, my clients don't really know that at these CPD conferences we waste time by discussing useless issues like 'Is smiling and greeting judges in Court who you are friends with a polite thing to do or does it show prejudice'.

    ECTRIMS has to happen. I love that it's now becoming more accessible. I do hate that half my social media wall is littered with much 'crap' coming out of ECTRIMS, to the point where it seems almost like advertising. I wondered if I should go into hiding during ECTRIMS so I don't need to see busloads of attendees going to argue about whether people with wheelchairs should be included in clinical trials. That just really stunk. Even if it is an important topic (at which I would scoff), when it is being presented in a space where people in wheelchairs sit, slogans like "P Coyle: we need to have rigorous inclusion and exclusion criteria. This does not involve wheelchair users" prolly going to raise some ill feelings in them and their families.

    Heck, my partner with MS is not in a wheelchair and the debate presentation (insofar as it was available to me in Twitter snippets) was, well, disturbing.

    On top of that, this blog and other MS media, seem forever busy trying to convince people with progressive MS that they have not been forgotten and everyone is working super hard to resolve the problems they face. Again, you can see how slogans like "P Coyle: we need to have rigorous inclusion and exclusion criteria. This does not involve wheelchair users" detract from that message and feel hurtful to those that are supposed to be helped from neuros gaining more and more knowledge through meetings like ECTRIMS.

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  3. Dear Anon, I agree we are cash cows, and our bodies are used like test tubes for low efficay drugs, but I think the bearer of any condition is in a similar boat. Where there are drugs, there is profit, power and more profit, no doubt glory too, and because of that there are underhand and immoral practises, along side the kindness and compassion that I am sure must also exist in the industry. Ultimately though, future generations will benefit from the crappy goings on we presently find ourselves part of. It doesn't help us now I know but s**** happens, in various forms, to everyone at some point, and ms is one of ours. We may have to look a bit harder than some for the positives in our lives but they will be there somewhere. You may not be able to lift your leg for instance but maybe you can swing a stick? I'll hold them down for you ;-) x

    MD, what is the drug that slows loss of hand function by 40%?

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  4. Its the slow progress that leads to such resentment. All these medical people living very nice lives and can switch off at the end of the working day. Whereas sufferers have this 24/7 and it can impact on everything they do.

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  5. I understand the frustration, but don't get the resentment. Most people in health and academia work long hours and only a small number are well-paid. I am glad if they go home to nice lives and switch off; they'll come back tomorrow refreshed and do a good job for us. Of course, many of them go home and look after an elderly relative or lie awake and worry about debt or try to manage an ongoing health issue or support their partner through mental illness etc etc. In my experience, when you scratch the surface, very few people lead truly easy, blessed lives. I'm just grateful for the dedication shown by many to an issue that affects me.

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  6. Wise words from Hatty Beanbag. I hate MS as much as anyone but don't understand the resentment towards those that work in the field. We all have to earn a living and I too am grateful for those that take an interest.

    I did think the gulf between the pro's and the patients was evident at MS Life today with Ectrims just next door. The two largest MS events under one roof yet clearly separated. I thought it a shame the two could not be combined. Thank you Barts for buckling the trend :-).

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