Last reply 2 weeks ago
Practical Action

I have become very frustrated by the continuing dialogue with the NHS and all the major MS charities.We all know there is NO cure yet and no understanding of the cause of this debilitating condition. Nevertheless, the charities are always looking for money and do not address the very essential practical help they could coordinate. The NHS on the other hand seem to be relying on ‘big pharma’ to come up with a cure whilst ignoring the more ‘left field’ approaches of smaller players. Surely a change of strategy is called for?

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keepsmyelin99
2 weeks ago

As a newcomer to the MS community, I agree. It’s very weird to read information on a charity’s website and then attend an appointment with an MS specialist who can’t tell you anything other than what you can already read online. I feel like there is a lack of funding for studies into other approaches because the money goes into pharamaceutical studies. Not that these studies aren’t relevant (they are, we need to learn about the efficacy of the drugs available) but that NHS professionals and MS charities acknowledge that there is a lack of scientific evidence to justify medical recommendation of left-field approaches, and then do not pursue this evidence through studies!
It’s a very strange situation where the patient can know as much as the doctor does about their condition.


stumbler
2 weeks ago

@jamesplummer , a change of strategy would be less profitable and would not be attractive to our capitalist society.

Cynicism or reality?


jamesplummer
2 weeks ago

I am constantly arguing with my partner as I am quite cynical about the medical establishment who I see as totally constrained by the logic of the capitalist system and therefore dominated by ‘big pharma’ and the logic of health as a ‘business opportunity’. This thinking is pervasive and even affects education meaning that young drs quickly lose their idealism and sufferer focus replaced by a desire for acceptance into the ‘establishment’ and career prospects. My thinking is shaped by a career in ‘start up’ technology. Few people are swimming the other way. I saw a site today that was inspiring-https://www.jamesdysonaward.org/past-winners/.Could Shift MS sponsor something like this?


itsmewithms
2 weeks ago

@jamesplummer I am married to a previous research scientist/systems programmer that stopped working 12 years ago due to his UC and to work on our old house and build our new house. In the meantime I continued working the corporate job and supporting the household. In that stressful environment and on that diet my condition continues to worsen over time. He, on the other hand, has thrived. Without the stress and following a strict diet he is doing great.

He thinks I should be able to exercise and eat my way to a cure from MS ;-0 He looks at cases like Terry Wahl and thinks maybe I should restrict myself to liver and kale to bike my way through this thing. Forget she also did chemo/novantrone and estim. The next week maybe it is “worm therapy” as all autoimmune diseases are the same, right? He accuses me of loading myself with inflammatory food and expecting drugs to carry me through? Drives me crazy. He changes tactics every time the wind changes.

While I am frustrated with the pace of progress I acknowledge that progress is being made. I think that forums like this are wonderful as we can all learn from each other and often more than we learn from our medical professionals..my Neuro is good (as are the ones I saw at Mayo in Rochester/USA) but they are taking down some notes when I talk with them 😉

I think there is some cure out there that works with all of these approaches. Terry Wahl radically changed her diet and micromes…they are finding that Ocrevus changes gut bacteria, hmmm… https://www.medscape.com/viewarticle/920373 have you followed her?

In addition to a strict diet Terry Wahl also has a strong PT adherence and estim therapy, this is the first time that I find she really discusses…some think it is all about diet (as that is what she sells/makes money on) but be aware of her whole approach involved chemo, diet and that must not have been enough so also estim: https://terrywahls.com/why-estim/

Device that seems to be her current interst?

Longer discussion of her whole program

Some people are finding that HSCT worked for them. Check out Dave Bexfield. Worked for about half and more successful for some than others. It is expensive but if it means other drugs are halted that could save $100k a year so it could pay off so insurance may cover https://www.msif.org/news/2017/05/03/long-term-outcomes-ahsct-ms/

Interesting treatment approach in India involving Yoga and diet that has been discussed on this forum: https://ayurvedahealingashram.com/multiple-sclerosis-ayurvedic-treatment/

I don’t see myself as someone that would be a pioneer. My condition, simply put, is not severe enough or worsening fast enough to take desperate measures. I also have family and a life that I love so I don’t care to be the test tube my husband would like me to be and believe that you would need to try one thing and observe it for a period of time to determine the efficacy…even with his history in research he somehow misses that point. A short period works for lab mice but not for people.

I encourage you and all that want to attempt a personal cure. Just make sure to research it and document what does and doesn’t work and hopefully with a supportive medical professional. Let us know how it goes- I think we all want progress but I am a natural skeptic


peterfrancis
2 weeks ago

@stumbler

Unfotunately a very sad but true reality… Money is God and profit by any means neccessary is the Gospel, especiaally when gained at the expense of of others.


nutshell88
2 weeks ago

there is no chanve we find a cure nit yet
they gain more by the daily weekly monthly yearly drugs
and then when you ask them do you know the cause to solve it with this
they say no its forever financial project just keep poisoning your organs untill you fall into a bigger problem other than ms and die
what do they think humans are brainless

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