MS Research Does it help us, when its to late.

Of course we all marvel at the latest MS Research Matters, and the developments, innovations and achievements. We want to marvel at the wonderful charity work by people to raise money for the MS Society, and there efforts to rid us of this terrible disease. Also to stop the disease from ever reaching people today, and help those in the very early stages of MS. But of course this does not help thousands, including my Step-Daughter Sarah, who are already in the late stages of MS (ie Primary Progressive). Top Consultants, Physio, Speech Therapy and others, its all to late. My step-daughter who is 36 cannot say more than 2 words together, so I cannot get from her how she is feeling. Her happy face has gone.It is hard for us as a family like many others, to see the work going on to help others. I wish it was for my Step-Daughter and others. Thankyou for reading this, and good luck to the MS Society in there Research. Thanks again Chris Brennan.

Hello Chris

I’m so sorry to hear about your step-daughter…this must be heart breaking for you and your family. I’m really glad its me that’s got the ms and not one of my children. No parent wants to watch their child suffer.

My heart goes out to you.

Love & Light

Noreen xxx

Sadly, breakthroughs will always come too late for someone. I’m almost 48 now - though not too badly affected as yet. However, even if a “cure” were discovered tomorrow, I doubt it would filter through to patient availability in time for me. I’d probably be in my 60s or even 70s - if I make it that far. Despite official denials of age discrimination, I can’t see myself being in the priority group of patients most likely to benefit. However, even if I realised it would be too late for me personally, it would give me some comfort to think MS was a problem that had been solved, and that future generations wouldn’t have to put up with what we’ve had to. I don’t have children, but do have nephews. Although I know it’s not hereditary, I do know having a blood relative with MS makes them slightly more at risk. I’m always anxious about possible signs. I’d love to think that if one or both of them ever did develop MS, the outlook for them would be much rosier than it has been for me, and they could look forward to a future where it’s not a big deal. Tina x

I don’t think any research can ever be wrong however long term the results are likely to materialise.

What I find so wrong is that people with MS (or indeed any other disease) are so ignored when they try experimental treatments and find they work. To ignor people with any particular condition just because what they have tried is not double blind tried and licenced and call their evidence anecdotal (i.e. old wives tales) is the crime against humanity in my view.

When evidence based medicine has a solution that can be afforded then I am sure we will all be very interested, till that point however it has nothing much to offer for MS.

If we look at MS then 10’s of thousands of people say LDN stops disease progress for them, There have been petitions on various governments, Medical conferences and now even a drug company days they are going to trail it.

Thousands of people have had CCSVI treatment and some report dramatic results, lots of them have campaigned for others to be offered the same opportunity placard demonstrations outside various MS Society events and government departments etc.

Then there is Terry Wahls who actually got herself out of a wheelchair and is starting to repeat her results with her patients by what is a rather complicated procedure all be it effective.

Now it would be very wrong to try to make a case out of one individual experience but when something is repeated over and over again to just say placebo effect/ spontaneous remission/ miss diagnosis and ignore it just seems to me so very wrong.

In the end all therapeutic interventions are an experiment, licenced drugs don’t give the same results for everyone and the newer one are being licenced despite the fact that some are proven to kill in some cases. They are also rationed on cost grounds so few in the UK get the cance to try them if that is what they want

D D - S S

So David returns to the themes that he uttered over the last few years - wrong then and just as wrong now!

There is NO medical or scientific evidence that LDN stops disease progress, only anecdotal evidence. David, of course, dismisses anecdotal evidence as “old wive’s tales”, thus rubbishing his own statement.

He has been asked in the past to give some lead to the “10’s of thousands” of people who are claimed to benefit from LDN - and has consistently failed to do so.

He says:
“licenced drugs don’t give the same results for everyone and the newer one are being licenced despite the fact that some are proven to kill in some cases”
When asked to identify those licenced drugs that are proven to kill, he has consistently failed to do so.

For some time (years) as regular readers will recall, David held forth a view that LDN could not be trialed because “Big Pharma” held the purse strings for research funding and would not spend money on an out-of-patent product. He dismissed every suggestion that was made for getting enough evidence to get an independent trial with a “that won’t work” attitude. While he was taking this attitude, the people running the LDN NOW campaign managed to get a Parliamentary Debate (OK so some of the data they used was false, but they got the debate) and took this on to an All Party Working Group. Then, of course, a major drug company bought the patents to LDN, and started planning to produce it in quantity and hold a Phase III trial. That trial is planned for this year, but is aimed at Crohn’s Disease. Why not at MS? Was there just not enough evidence that it worked, or a big enough potential market - despite the “10s of thousands” of people that David says have benefited from LDN?

Then we have to ask: “Why drag CCSVI into this?”. Science is taking CCSVI very seriously, and there is a lot of research either just finished, or in progress, on CCSVI. Of course, the first question to be answered is that of whether CCSVI is a cause of MS, or a symptom of MS. This does not really matter to the CCSVI fanatics - they will only accept evidence that CCSVI works - negative results are dismissed as having the data rigged in some way.

And then, we have to ask: “Why drag Terry Wahls into this?”. There is a lot in the Wahls Protocol. Wahls herself publishes in reputable peer-reviewed journals. This is somewhat different from the “Cure your own MS - buy my book and find out how” type of person, holding out hope to those who do not know how modern science works.

My position is clear - I doubt if any of the current research will help me at all. At my age, I doubt if any of the new medications would benefit me. I do tend to look at the side effects first before making up my mind - and that is why I will not go for Fampyra (for example). I might well go for LDN if I move to SPMS, but I am not listening to “old wives tales”, rather I listen to people I know, and trust to be objective about their use of LDN.

So, like I said: “Same old, same old”.