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2 months ago

Hi @ryanc,

We’re always trying to improve the experience for our members. This sometimes means letting go of things that we’ve built so we can focus our efforts on the areas of that have the highest positive impact.

With this in mind, decided to suspend ‘Thought Sort’ at the end of last year.

We remain focused on facilitating a safe, open community dedicated to supporting the process of coming to terms with the diagnosis of MS. We will continue to do this through the ongoing development of the social network and the production of resources.

If you found value in online CBT, suitable alternatives may include :
1. Cognitive Behavioral Therapy Online –
2. Life Skills Online –
3. MoodGYM Training Program –
4. Online CBT for anxiety –

Hope this helps,

2 months ago

@ryancCBT is a fabulous tool for mental wellbeing, so it’s a shame it has been discontinued here, but not unexpected.
Talkin about MS all the time via surveys, ‘awareness projects’ short films etc are not particularly helpful to anyone other than the very newly diagnosed
….but then when you have your own media production company masquerading as a charity, then I guess it is…

2 months ago

@acceptance totally agree on so many of the videos and information out on the Internet regarding MS. I think that is one reason why the “old timers” pretty much dismiss those messsages or have the “sour grapes” attitude that I saw a recent article on. It covered the “cheerleader” “you ra ra” attitude…” you can do this” message in so many of the articles and publications and for those of us that have been around a while the message isn’t received too well ;-0 The “you can solve this” attitude of “if you just eat right”, “if you just take your DMTs”, “if you do your exercises” mantras are pretty insulting because they imply that “MS is your fault for not following my advice”…right..we’ve all been out here and are likely following someones advice ;-0 but when so many of them are contradictory and sometimes plainly impossible it can be totally too much!

A few sites that I still check in with and feel I get something from, whether it be educational, inspirational or sometimes humor ;-0 is Aaron Boster and Life of Seb (You tube) and also Roger Southalls blog on his MS journey. Maybe we should compile a list of what we have found helpful as the good ones deserve to be shared…and the others likely disregarded and if they see the lack of response maybe they will just fob off (an American trying to be global ;-0 not sure if I used it correctly) or know they have to improve their content to get any attention from the MS community.

Which ones do you feel, already, should be cast off?

2 months ago

Thank you for commenting on my comment, you’re clearly a wise and verbose gal…

I do think that it is very important not to dwell on a diagnosis too much when you are newly diagnosed. I also won’t argue with the ‘keep positive’ etc advice. I did 20 years of ‘mind over matter’ and it worked for me?

I guess I was alluding here specifically to ….it’s pointless for me to go there actually….I’m probably better mentioning sites that; as a secondary progressive decades in, i can’t relate and have no interest in idealism – rather the realism of living with an incurable, degenerative condition for a long time.

The sites i have found helpful,informatiive, uplifting, inspirational and darkly funny; are specifically – the wheelchair kamikaze, Bethy bright and dark, Devlin and Trevis at everyday health; and my favourite – Adra at Tripping on Air.

They’re clever, pragmatic, adaptive and stylish in their take on it all, whereas I find Boster a bit car salesmanish tbh

He makes nearly a million quid a year from the pharmas dontcha know. Mind you, who doesn’t make money from advocating pharma, under the guise of ‘educating’ …I’m done with all that and prefer to keep it real with real people like the above; and of course, our dashing Rodger….

2 months ago

Great list of sites for me to check out.

I fully expect that someone like a Neurologist that can make big bucks doing about anything is going to make money on the speaking circuit and putting together videos. He doesn’t seem to really support one over the other, however, other than being of the camp to “hit it hard” and hit it early vs the other camp which is to take the gentlest approach that seems to hold it in check for you…the problem is that you only really get to check it on an annual basis in your MRIs and then any switch they say will take months to start to see impacts so, unlike lab mice, we really don’t get too many tries of getting this wrong! ;-0 and it is our life and mobility we are playing with.

I was an IT ERP implementation person that billed out for like $200/hr so wasn’t used to giving my time away for free ;-0 I see that Aaron Boster is in Ohio and not in some big city that likely gives him a huge customer base. I figured that is why he can do the videos and conventions he does. He also seems like a real extrovert so is likely a good outlet for that. I get what I can from whatever is out there. But, I too, have been with this awhile so have a more pragmatic and even cynical reception of some of them. The quid amount is $1.3M and there is likely some production cost with that and then you add what he makes from the speaking circuit and his salary as a neuro and it seems high to us but in the realm of what I would expect for the medical profession in the states with this type of specialty.

Onto your list I also have watched through all of the “Life of Seb”on You Tube. He keeps it pretty real. Gay guy that has bounced around Europe a bit. Into Yoga and has good insight…sometimes a bit dark but usually quite inspirational.

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