Why is the MS Society AND its members always so negative

I keep wonering and I keep asking ...

Why is the MS Society AND its members always so negative?  I almost wonder whether some there would be really disappointed if MS was shown to be curable.

Thirty years ago there was only one health issue in the news (and all the time too): AIDS!  Thirty years ago AIDS was thought to be incurable; why?  Because it was.  Today, after much sensible research and enormous collabiration, we hear of people walking away from HIV infection.  Yeah, science has done a great job.

MS seems to be a different matter. They have been banging away at that for a great Many decades.  Dr Thibault's suggestion that, having gone down the wrong road, their is too much face to be lost by admitting that they were wrong, sounds so plausable but it is such a pitty that it's right.

Can anyone offer up an explanation as to why The (British) MS Society seems just so useless.  I already realise that they are in the image of much of the membership.

G

I remember posting on their site because of something Sarah had mentioned, oh, maybe a year or more ago.  I was roundly chastised, and worse, and thought what mean-spirited people the responders were.  For that reason, I didn't go back.

I truly DO understand how chronic disease and/or chronic pain can really affect someone's attitude toward life and toward others, but what I can't understand is how someone can give up on themselves.  I would have tried and tried and tried, til I found something that worked for me.  I would (well, I did, actually) have scoured the internet and the ancient texts on MS til something rang a bell for me.  I would NEVER have said 'this is my lot in life, oh well'. 

Supaguy, there really IS a weird thing about being cured (or, before I get jumped on again, 'recovering').  You're suddenly not 'special' anymore.  You have to get back on the road and start moving forward again.  You have to go to work every day and you have to meet your obligations, and you're NOT the one everybody oooohs and aaaahs over.  I remember one night, when I realized the protocol was working and my wits had come back and my short-term memory was recovered, I thought, "Oh.  It's not all about pills and supplementsi and doctors anymore".  I'm not saying I was disappointed, but I am saying it was kind of a lightbulb moment.  And here's another one.  I bought some architectural salvage from a guy who seemed a bit 'off' with his walking and his speech.  He offered that he had MS and it 'sucks' and that I couldn't know what he felt like.  I told him I DID have MS and had been on abxi for a few years and I could refer him to my doctor.  He said, "Hmmm, I might have to go back to work."

I think there also might be a bit of jealousy involved.  I'm just being honest here.  People who feel they've been there and done that and tried everything, don't like hearing someone like me say, "I'm cured".  Why me?  Why not them?  That's not fair!  But they've tried so many things and I got lucky the first try, so it couldn't POSSIBLY be a 'real' cure.  I'm just in an eight year remission.  Any minute now, I'll have a relapse and they get to say, "I told you so."

And don't discount the phrase, 'misery loves company'. 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi Gentlemen,

Darn good question....  I seem to be getting the same kind of reaction from folks in a local MSi support group.  "How could it be that simple?" Or just being completely ingnored.  I'm going to talk to those folks in person soon.

 Rick has been every so slowly getting more cautiously optimistic himself - he - especially at first, didn't want to get his hopes up just to have them dashed again, so he was a bit skeptical - we had the same high hopes when we discovered the role gluten was playing in his disease, and while it likely drastically slowed the progression he was experiencing - it didn't stop it.

This too shall pass.  As more and more folks experience "recovery" or a "cure" - <semantics - not interested in picking that nit myself!> - the word will get out.

This is becoming "viral" - or is viral.  I have mentioned this to anyone who is willing to listen, on the chance they know someone who has MS.  By my estimate - in about 5-6 months - I've sent the 3 most important links to probably 8 folks - 6 who I know, know someone with MS, and as far as Brazil in one case.

I know you folks have been doing the same thing.

Writing from Hawaii - with my beautiful Fiance' - on the occassion of my 60th Birthday!

Best & Highest Regards,

Tom

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Um, 'gentlemen'?

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I no longer try to actively educate anyone who doesn't seem genuinely interested in the CAPi. I've wasted too much time and energy dong that.

Some people don't want to get better.

Some people only want an easy 'magic bullet' cure.

Some people want someone else to be responsible, and therefore won't stick their necks out.

I truly believe that the 'cure' needs to be earned. It's the person who does the research, finds the CAP and takes the leap, whether solo or under the guidance of a doctor, that will find success. The will to make it work is as important as the problem solving skills involved. Nothing is cut and dry with this protocol, you need to be able to roll with the punches and adapt. 

A couple years ago I had some bussiness cards made with the url of my blog on them. Whenever I run into someone interested in what I'm doing, I hand them a card.  It's a starting point and its up to them to either use the info or toss the card.

Oh Gosh!!

Sorry Mackintosh - my bad there.  I read the posts, but "Mackintosh" didn't register. 

So - Again - my apologies!

Tom

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

"It is important … to be cognizant of the different and somewhat antagonistic views and goals of the two groups that comprise the MSi family – those that live with MS and those that live off MS." Dr Ashton Embry, founder of charitable society “MS-Direct”, Canada

RRMSi, DMD = Copaxone, OMS Prof Jelinek approach. 

Commenced ABXi post Catalyst program Sep 2012.

Drugs- Minocycline, Azithromycin, Tinidazole, LDNi, 4AP, Oxybutynin Hydrochloride, 

Supps- NACi, Acetyl L-Carnitine, D3, B12, Prob

Someone on the MSi UK society site once told me off for not realising that the site was full  of neuroscientists.  I wondered why so many neuroscientists ended up with MS. Of course iit is the other way round and also the Open University probably plays a part...............Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi chapz (& bintz! lol)

Yes, extremely interesting observations.  It is very sad that it is actually I and we that seem to be out of synch with the vocal majority.  The idea that somebody doesn't want to get well and perhaps wallows in their own missfortune is a compete anathema to me; to even think that about somebody sounds just so right wing and reactionary; it goes agains every moral that I have grown up to accept - and yet, sadly, this seems to be sometimes the case.  It is perhaps that the illness takes over their life and then just becomes them - which is easy to understand because I know that is actually happening to me.  Think about it: if I were to recover from this, what would I be?  At the moment I'd be a dammed sight better off - but if you've been like it for 25 years or more, the prospect of being different has gotta be daunting.

So, Mack, you went on the UK's MS website!  Did Sarah not warn you to take antidepressants before hand?  She just let you go?  Tut!  Although you are 98% recovered from MS just how far away from recovering from the depressing, demotivating and demoralising experience of engaging with the UK's MS Society are you now?

Ok, I went there too.  Can you believe that they didn't seem to embrace me with open arms?  Can you believe that they are not eagerly awaiting my next post?  Can you believe that they didn't seem to like me?  Can you believe that they have a secret weapon that will counter my strength of arument?  Did I hear you say "What's that?"  ... Yeah, they'll just ignore it completely.  Here's the tread:

http://www.mssociety.org.uk/forum/primary-progressive-ms/combined-antibiotic-protocol-ms<

(Oh, bye the way, Happy 60th birthday, Tom!  lol)

Emu's comment about "those that live with MS and those that live off MS."  To know which camp you fall into, if you find the quote offensive then you probably fall into the 2nd catigory.  Mack's quote about "Missery loves company" fits oh-so-well!

I suppose a good argument for anyone with MS just sitting there and twiddling their thumbs is that you may as well twiddle your thumbs while you can ... because with MS, you never know where it's going to attack and what it's going to hit next (Happy twiddling!).

Oh, to those of you out there that will call me a cynic, I would say that I am a skeptical realist.

Right, before I forget, if anyone wants to donate to The MS Society, here's a link:

https://beatms.mssociety.org.uk/NetCommunity/SSLPage.aspx?pid=1508<

Now remember that £54  could go towards an hour of ground-breaking research.  If you are state-side or in ausiland you will still get the benefit of that research.  Don't delay, step up to the plate today!  Please feel free to brag & boast right here on this very post about how much ££££ you have just given to The MS Society this very day.

G.

 

 

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Hi Emu,

So you've heard of Ashton Embry! 

MSi-Direct started focusing on vitamin Di (in short supply naturally in many parts of Canada) and diet.  They still fund some of Terry Wahls research, but today they are mostly focusing on CCSVI.  Since I've been down that road twice, without any success, I'm not sure it is the right path..... 

 

I wish MS-Direct would turn towards antibioticsi because it would bring attention to this treatment in Canada. 

Glenn, Mackintosh came to help me, but it was of no use: neither of us had studied neuroscience after all, so no matter how bright we were it didn’t count!  After all, if we had studied neuroscience instead of trying to get better, we would have realised that we both had an incurable disease.

Healthygirl, AE told me many moons ago that the disease wasn't caused by a bacterial infection, so abxi would be no use.........................Sarah

A Journey through Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Sarah,

I'm glad to hear that you were in contact with AE.  Perhaps he'll come around if/when he reaches the end of the road with CCSVI....

Sarah (& Mack), can't you even read properly ... or was that just a casual slip up?  The MS Society is not full of neuroscientists ... I think you'll find it's neurotics.  Yes, they look similar in print and, as it happens, probably behave similarly in real life too.

Regarding your friend AE's assertion of what MS is not caused by ... seeing that he is almost certainly of the shcool that always asks for "Proof", have you asked him for said proof  ... and whilst you are about it, have you asked him if he's published and peer-reviewed his result of what actually does cause MS?  Naturally, one assertion follows the other.

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Yes, neuroi-scientist does sound somewhat similar to neuro-tic, espcialy if neuro-scientist has the prefix amateur

I doubt very much if Ashton Embry even remembers having been in contact with me.  Afterall, as a doctor in geology, if his son with rrmsi benefits first of all from his Best Bet Diet and then a while later from CCSVI, why should he opt for something serious?  Well, maybe he will when his son’s disease turns progressive...........................Sarah

A Journey through Light and Shadow

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah,

So Mack went there to render help.  It seems that they pounced upon her like a schwarm of 109s straight out of the Sun.  Well that was then ... seems that today no one's come out to play.  All their neuroscientist have stayed in bed ... or run off for a sulk.  Did you see the thread?  Clearly, the policy used to be: if we don't agree with you then we'll censor you ... now they just slink away.

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Hi Jen,

First - in the short time I've gotten to "know" you - I have developed a very high respect for you and your thoughts and insights.

So - please don't take this wrong.

I disagree with one point you made - I don't think anyone should have to "earn" good health - or the "cure."  If the CAPi protocol was the standard practice in medicine - they would just get it in the natural course of things.  That it is not - is more the fault (if it can be called that) of the medical and scientific community, not the fault of any one individual.  One day - it may well be that folks are screened and treated on the first presentation of any symptoms - with a single pill that eradicates the nasty little bugger and contains some kind of super mopper (nano-sponges) - that prevents any difficulty with the "die-off."  I don't think Rick should have to "earn" the right to his health - or you or any of the many courageous, determined and fiesty delightful folks her should either!

In my opinion - good health is our "god given" right.

To balance the above - my beautiful Fiance' says she thinks you meant to say that folks who are working on the CAP protocol need to be self advocates and spend time learning of the various aspects of the protocol.

May your recovery be as smooth and complete as possible!  Happy Holidays...

Best & Highest Regards,

Tom

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Hi Supaguy,

Thank you for your "Happy Birthday!"  I am shooting for double my current 60 years.  We shall see!

Happy Holidays...

Tom

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Tom,

Your fiance is right.  But earn is probably the wrong word to use.

 

Tom ...

You are most wellcome

... and I really do hope that you double your score.

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

I’ve been doing CAPi for over two and a half years now and agree completely with what Jen has said.  For some of us, this process is more difficult than anything imaginable.  And completely relentless.  But I fought for 25 years to find a way to get well and it’s that determination that’s keeping me going.  It’s not just a matter of taking a few tablets each day – I think that’s why so many people are so defensive when anyone suggests that an antibiotic could make them well.  They seem to feel it is belittles their illness in some way, as their only experience of antibioticsi has probably been a 5 or 7 day course, for an infection, which has made them feel more well in that short time.

I realise some people have less of a struggle with CAP than others – but I really don’t feel that, for anyone, it’s a passive treatment at all.  I’m often saying, when I’m feeling so sick and ill and debilitated from all of this, that only a crazy person would stick with it.  I don’t think I would be able to stick with it, and keep taking all the bucketfuls of tablets each day, if I didn’t believe in it completely.  And I believe in it not because it has been handed to me on a plate by a doctor who said ‘take this magic bullet cure’, but because, as Jen says, I did the research and then took the leap.

Perhaps in an ideal world, there would be doctors to go to, who could prescribe the single pill Tom mentioned.  And everyone could passively take that tablet, whether they believe it is going to help them or not.  But I still feel, in our present world, that the refusal to accept that there is nothing which can help, and the battle to find answers, and then the struggle to find a way to do CAP when doctors are working in a system which means they cannot prescribe, is just rehearsal for the struggle which the treatment can be.  I certainly feel it’s stood me in good stead for the experience.

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Hi All and to you too, Boadicea!

I am certainly thankful that I seem to be tollerating the antibioticsi, as prescribed.  I know that our bodies are all different and tollerate different things differently.  I hope that you slightly different version of CAPi is working for you at last; I know that you had, at one time, seen glimmers: that still the case?  I ask partly because I suspect that I have an abscess forming under my arm and I am considering adding amox into the mix, even if only for a short time.

Regarding "This system" that we live under; the system where doctors cannot follow where their nose takes them.  I believe that The MS Society is an integral part of that problem.  I believe that if the MS Society were to fold tomorrow, the vaccum would soon be filled by a worthwhile organisation that would fight for our interests and promote our wellbeing.  Alas, I can wish away; I can wish all I want ... they are as sound as a pound and their money keeps rolling in.

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

I just went to look at your thread and what did I see?  Lots of people with MSi with their legs splayed out on the railway line, waiting for a train to come along!  You are so witty!  I told David who fell about laughing...........Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

About 25 years I suffered a running injury.  This was devastating for me.  I went through withdrawal from all those endorphins.  I had a demanding job and I had trouble releasing stress from my body. 

Canada is a big country and this happened before the internet.  Just the same, I found and met with doctors and specialists in three different cities (in three different provinces) AND after a few tough years – BINGO! – I found a sports medicine doctor who got me running again.  I went on to complete a half-marathon.

I believe I earned that half-marathon!  I also believe that experience was a blessing in disguise.  My success in getting through that maze keeps me believing that I’ll get through this one as well.

Here’s hoping that we all enjoy better health in 2014!

But Sarah ...

 

please, can you tell me ...

 

... can you explain to me ...

 

why they don't like me there?

 

Mine is the final post.  Nobody is going to that thread; nobody is coming out to play.  Why oh why is that?

 

Those people there ... they click each others "Like" buttons an console themselves in the philosophy of all going down together.

 

I discovered there that I am intellectually weak ... as are my arguments: that's why they've all run away!  I may go angling again tomorrow but at the moment they have all run for cover.

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Oh, thanks, Sarah.  Now, I'll HAVE to go back to that unfriendly site and at least read the thread.  Rabblerouser. Tongue Out 

I should post again and tell them about my 'disabled' self and how I spent my week getting up at eight a.m. and falling into bed past midmight after full days of heavy construction, including lifting and carrying, plus removing a window air conditioning unit myself, then evenings spent at dinners out and a music concert and one night driving eighty miles roundtrip to buy ten square feet of a particular mosaic floor tile.  It'll raise their hackles, for sure, and once again I'll be told I'm either lying or I never had MSi in the first place.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hey Mack ...

You are bigger than all of them at once.  These people have no bottle.  Let us know when you're going and we'll all go together and beat the shit out of 'em.  They've got no bottle anyway.  They have squat minds and squat horizons.  The only way that they'll triumph is if their mates the moderators censor our posts.  They click each other's like buttons because it makes them feel right.

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

I just popped in and read it.  Not so bad, just sad. 

MSi is incurable!  No, really?  But, why is it incurable and how do they know that it's incurable?  I don't think anything is incurable; every disease is just waiting for a cure. (Should we all turn our back on it when the cure is found?  No, it can't be so!  There IS no cure.  Lalalalalala, I'm sticking my fingers in my ears, I can't hear you, there can't be a cure, because I don't believe there is a cure.)  Many cures for 'incurable diseasesi' have been discovered and many more are in the pipeline.  That's a big difference from BEING incurable.  Lots of hopelessness in that thread.  

Supaguy, I have a feeling you may have inspired Sarah, or David, or both, to an artistic interpretation of your cringe-worthy description of folks sitting on the train tracks in denial. 

It's odd, but I've developed some kind of force field around me on this subject; I'm one of the most sensitive people I know and I'm hurt when people attack me, but where this treatment and my recovery are concerned, they can say whatever they want to say and it doesn't matter a whit to me.  Recovering my mental faculties was primary and reversing all the bizarre physical stuff was a gift.  They can call me whatever they want to, but I got my life back. 

 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

of course they don't believe there is a cure....how can you cure something when you don't know (or believe) what it is? You need a starting point and they don't have one. So logically, in their minds, there really is no cure. 

Unfortunately, msi effects many peoples cognitive abilities, and if they don't have their wits about them they rely on the professionals to be their advocates. once again, the professionals don't seem to be well versed on the cause. blind leading the blind.

as a former board of directors member for my local ms chapter, I found that many people do play into the victim role. And the pharma companies call the shots as they fund the national societies.....so of course they don't want a cure to be found. could you imagine how much money is made yearly through fundraising and pharma costs just with ms? Its a business, and we all carry a price tag on our heads. Infuriating! 

I for one, am very greatful I come from a family of researchers. raised to always believe there is an answer, you just need to look for it, I was fortunate enough to find this site. It certainly is a difficult haul, on many accounts, physically, mentally, emotionally. But, the end result is well worth it. Even if the end result is only to stop the progression, I'm fine with that! 

Oh, oh, and the flagyli does create an emotional tearing monster in me. Lol. 

M :)

Hey Mack ...

That wasn't so bad, was it?  There were no ME 109s and no Hun in the Sun.  They are cardboard cutouts of people.  There is nothing there to be afraid of ... nothing ... because there was nobody there: they've all run away (I mean "Run" metaphorically).

Bye the way, I suspect that they are right: there is NO CURE ... that "They" are incurable - yes.  Well they are never gonna move from the tracks.  By the time they consider swallowing thier first doxyi, the train will have been and gone ... and taken their legs with it.  Not all have the NACi to get off the track.

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

They are resigned, I'd say.  And that's something I just can't do. 

That old line about not going quietly into the night... I guess, when it comes to push or shove, I'm going to fight all the way.  The only way I'd let MSi beat me was if I was physically so disabled, I simply couldn't function enough to research for myself and manage my own medical care.

 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I think I have said this before but I'll say it again (which concurs with you own view I think).  I'd rather my headstone read "Killed in action" than shot while asleep.

The sad reality is that it is us here a this site that are different.  If you go to an MS day centre you will find them playing bingo ... none of this ridiculous nonsense about "Cure" and "Getting better".  These people sit back in their wheelchairs when told and are most grateful for what they have been given.  Many even have powered wheelchairs.

I better shut up before I depress you even more.

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

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