Multiple Sclerosis Research: May: Unrelated blogger comments

Sometimes you what to say something that is unrelated to the threads. This is a spot for You.

You can access from the bar at the top of the page or view the post in the comments on the right. These are moved to stop the thread from becoming too long.

Anonymous said...: Why isn't spasticity on your 'diabling MS symptoms' poll? Spasticity os the bane of my MS, both in my legs and hands. I hear its a common MS symptom.; Tuesday, May 08, 2012 7:30:00 PM
Anonymous said...: Similar problem - the most disabling symptoms are ataxia in one hand and tremors in the other; Tuesday, May 08, 2012 7:48:00 PM
The Human Connectome Project: creating a complete roadmap of the brain said...: Is this video useful to you?

http://www.guardian.co.uk/science/video/2012/may/07/human-connectome-project-roadmap-brain-video?INTCMP=ILCNETTXT3486; Tuesday, May 08, 2012 8:11:00 PM
MouseDoctor said...: Yes it is important I don't know why Prof G missed it out, I'll ask him.

Hope it wasnt because of CoI as we are tying to develop a drug to treat spasticity.; Tuesday, May 08, 2012 8:30:00 PM
MouseDoctor said...: I will email him (Prof G) to ask about ataxia, tremor and spasticity,
I guesss you could tick other in the survey; Tuesday, May 08, 2012 8:36:00 PM
Gavin Giovannoni said...: Re: "Why isn't spasticity on your 'diabling MS symptoms' poll? Spasticity os the bane of my MS, both in my legs and hands. I hear its a common MS symptom."

Spasticity is actually a sign that is detected and described by clinicians. Very few MSers actually complain about spasticity. It typically presents with walking difficulties, stiffness, pain and sleep problems. Ataxia is also a sign; most MSers will complain of unsteadiness. Tremor is one I missed. The purpose of the poll is to highlight the massive unmet need there is for symptomatic therapies. Please use other! We will do a more systematic study survey in the near future on this issue. Thanks.; Tuesday, May 08, 2012 8:52:00 PM
MouseDoctor said...: Is the video useful...
Yes interesting thanks; Tuesday, May 08, 2012 9:17:00 PM
Anonymous said...: Severe unsteadiness & tremors in the hands are very disabling. It's almost impossible to write and the handwriting looks nothing like what it was. For walking problems you can use a wheelchair. If hands don't work there is nothing you can do except depend on others; Tuesday, May 08, 2012 10:17:00 PM
Anonymous said...: What do you think about this study that concludes from a survey of MS neuros that it is common for people to be incorrectly diagnosed with MS and that this is wasting large numbers of healthcare dollars?

http://medicalxpress.com/news/2012-05-misdiagnosis-ms-health-millions-year.html; Thursday, May 10, 2012 4:36:00 AM
MouseDoctor said...: There is misdiagnosis for sure, I will have a look, I believe paper is supposed to be in Neurology from a group in Oregon but have not yet tracked down the source so if anyone has the link it would be useful.; Thursday, May 10, 2012 11:54:00 AM
MouseDoctor said...: CAN YOU HELP ME

The story on disdiagnosis has made a splash,

Maybe I am blind but I cannot find the original article that the sites say went on line yesterday.

The story will have been from a press release probably from the University/VA Centre in Portland
but I cannot see on Neurology where the actual article has been posted. May be they got the embargo dates mixed up

If you know it, can you post the link to the title/abstract I can do the rest. I have written to the author.; Friday, May 11, 2012 10:57:00 AM
MouseDoctor2 said...: I can't find the article either. I'll contact Neurology.; Friday, May 11, 2012 12:08:00 PM
Maria said...: Is this the article you're looking for?

http://www.neurology.org/content/early/2012/05/11/WNL.0b013e318259e1b2.abstract?sid=d8cfe149-cd4f-4e1b-ba97-453ae2cbc5d3; Friday, May 11, 2012 2:31:00 PM
MouseDoctor said...: Dear Maria
You are a star.

Thanks very much, us old farts was looking too early.

Doing the same search now finds it in a second.; Friday, May 11, 2012 2:48:00 PM
MouseDoctor said...: Interestingly Neurology has only been loading new stories once a week or more for the past two months so it is interesting that this appeared 2 days after the last upload. Maybe the media interest or the MD2 nudge prompted action.; Friday, May 11, 2012 3:33:00 PM
MouseDoctor2 said...: I think my nudge this morning might have achieved the desired effect!!; Friday, May 11, 2012 4:02:00 PM
MouseDoctor said...: Heard From Dr. Bourdette
The paper should have gone public on the 9th May so a mistake at the Journal Neurology.....so MD2 saves the day Hurray; Friday, May 11, 2012 4:54:00 PM
Novartis, Scum! said...: How do you guys feel about Novartis taking legal action against four NHS trusts for using a cheaper drug to treat macular degeneration?

Isn't this further proof of big pharmas' greed?

Us MSers are a cash cow, as are all ill people. The money is not to cure people, merely to treat them with expensive drugs. If we don't pay, we don't get. Is this not why Fampridine is out of most of ours' reach?

http://news.bbc.co.uk/today/hi/today/newsid_9719000/9719186.stm; Sunday, May 13, 2012 7:20:00 PM
MouseDoctor said...: Yep...we have made comments on this before.

The reason here is people are using avastin to do the same job as Lucentis. Lucentis is massively more expensive (ten times) than avastin which is licenced for treating cancer and not the eye condition. Novartis is saying that this is affecting the regulatroy process and patient safety. Everyone else says it is affecting Novartis profits.

As was present last week however the NHS has sponsored a trial on this very issue and shows shows there was no difference between the two.

As can be heard from the radio interview the Novartis representative just wriggles around the questions.

As a result of the new trials lets hope that avastin gets a licence. If the regulators do that then pharma would have no leg to stand on.

The problem about costs, is not an issue of how much Europe will pay but how much the Insurance companies in the USA will pay. If the US stopped playing ball prices would not be so high.

For MS, what we need is a drug that is as good as the current drugs but is out of control of pharma and cheap. It exists, as I have been saying for sometime, it needs to be done, and actions such as taking on the NHS like this hopefully will come back to haunt them.; Sunday, May 13, 2012 8:48:00 PM
Gavin Giovannoni said...: Re: "Isn't this further proof of big pharmas' greed?"

May be and may be not! Pharma is a business that has incentives to make money. Most Pharma companies are listed and therefore have shareholders; the major pharma shareholders are pension funds. Therefore, possibly your pension and some of mine depends on them doing well. In addition, pharma pay a large amount of money in tax. Our government does very well out of pharma; the pharma industry is ~6% of the UK's GDP. The development costs of novel drugs is so large and risky that Pharma is the only model for developing drugs. Usually the pay-back for risk is big profits. If we don't reward risk we don't get any risk-takers. The pharma industry is no exception.

Who created the beast?

So if you take a macro-economic view of pharma it is in everybody's interest that Pharma does well. The issue here is getting the balance right between reasonable and unreasonable profits and reasonable and unreasonable behaviour. I am not sure what the correct answer is. If we erode the incentives for developing new drugs we reduce the chances of getting new drugs for MSers. What we need is some give and take! There is no easy solution.

I wish Pharma didn't have such a bad reputation; it makes it difficult for them.; Monday, May 14, 2012 2:36:00 PM
Beverley said...: MD,
This drug that is as good as the current ones and is cheap- is it IV cladribine? Was the oral form withdrawn from going for FDA/EU approval due to safety issues? (although I think it was used in Russia). Do you have to go through all the trials again with a drug if it has a different mode of use, such as oral or IV cladribine, or IV or subcutaneous alemtuzumab, and why does it matter?; Monday, May 14, 2012 3:47:00 PM
MouseDoctor said...: Oral Cladribine was withdrawn because the company (Merck Serono) decided not to develop it!

It would need additional trial for approval in USA and Europe, although it was licenced in Russia and Australia, because of a potential safety liability.

Was this liability any different from Gilenya, Nataluzimab, Altemtuzumab, BG12.
In some cases there may be advantages as there was no report of Graves disease that occurs in 20-30% of people with Alemtuzumab.

Would you need new trials if you change the route, I believe yes because the different routes affect the pharmacokinetics of the drug (i.e. how long it lasts in the body) and this impinges on safety profiles.

Perhaps see past posts.

http://multiple-sclerosis-research.blogspot.co.uk/2011/06/bad-news-regulatory-update-on.html; Monday, May 14, 2012 5:36:00 PM
Anonymous said...: This isn't a question. I just wanted to say thank you for persevering with the blog despite all the hassles. I don't think there's another venue out there quite like this one and it fills an unmet need. This is probably illusory, but I feel better thinking that I know more about what is going wrong with my body rather than less.; Friday, May 25, 2012 3:31:00 PM
MouseDoctor said...: Thank you; Friday, May 25, 2012 5:38:00 PM
Anonymous said...: People who run this blog:

I too want to say thanks. You guys beat anything that so-called larger MS 'societies' offer, though I don't meant to devalue their contribution in any way.

To be honest, some MSers want a sympathetic ear, while others want to be clued up on what's going on and progress in research. I fall into the latter. In that sense this blog is seriously good becuase it provides an education. Education is king, is it not?

I have been watching the MS Life 2012 videos. It really seems the international effort to repair nerve cells is going to pay off in big ways one day, although I did notice Prof G was the most conservative participant on the pannel. I suppose he has learnt that us MSers can be a problematic lot, expecting miracles when small improvements will be suffice.

Good luck to you, and good luck to all living with the disease.; Saturday, May 26, 2012 2:32:00 PM
Save Our Axons said...: Prof G, I have just watched your lecture at MS Life. You talked about a patient of yours called Graeme Wilson, a young man with MS that unfortunately died recently. You said his progressive disease was very aggressive, this despite him being on almost every DMT imaginable.

How commen is sudden death in MS? I take it it's rare but it is a real feature of the disease. The reason why it seems scary is because it seems Graeme Wilson was blogging up until his final days. He was active. So sad.; Saturday, May 26, 2012 4:52:00 PM
Gavin Giovannoni said...: Re: "How commen is sudden death in MS?"

Rare, but under reported. I was at a meeting in London with 14 MSologists and four if us could recall a sudden death amongst the MSers we looked after.

http://multiple-sclerosis-research.blogspot.co.uk/2012/02/sudden-death-in-ms-or-sudmus-1.html

I was very sad when I heard about Graeme. He was an MS activist and did everything possible to get a shot at a treatment that targeted progressive MS. His father gave me permission to dedicate my lecture to his memory. If you read his blog you get an idea how intelligent and sensitive he was and what an impact MS had on his life. If only we all maintained a blog to let the world see the other side?

I hope the MS Life talk gave you some hope regarding progressive MS?; Sunday, May 27, 2012 4:14:00 PM
Gavin Giovannoni said...: Re: "Prof G was the most conservative participant on the pannel."

Correct, not because I don't believe progress will be made, but I know the rate of progress is always far too slow for MSers with progressive disease. I try and justify my stance as one that tries to manage expectations. The backlash we had from the PROMISE2010 programme was overwhelming in that MSers expected treatments. In reality we have only just go to the point of starting trials in MSers to try and test some of the lab work we did as part of that programme.; Sunday, May 27, 2012 4:17:00 PM
Anonymous said...: Calling Vasilis Vasilopoulos, where are you?

I sincerely hope you are okay and have not had a major relapse or suffered any serious complications from your latest CCSVI treatment?; Sunday, May 27, 2012 4:29:00 PM
Vasilis Vasilopoulos said...: Nice of you to ask, thank you. I'm now more than 14 months relapse and fatigue free. It's just getting increasingly disappointing to see that everything about MS continues to be drug-business as usual, and that cases like mine are still accounted to placebo or remission without proper research or even second thought.

No neurologist bothers to explain why all improvements began 24 hours after the procedure, following a clear feeling of a head getting empty. Can anyone?; Sunday, May 27, 2012 6:46:00 PM
Anonymous said...: Everybody who visits this site should listen to the BBC Radio 4 documentary "THE END OF DRUG DISCOVRY".

It's an amazing insight into big pharma.

http://www.bbc.co.uk/radio/player/b01hxh76; Sunday, May 27, 2012 8:06:00 PM
Save Our Axons said...: Hello Prof G.

I did enjoy your lecture and do feel hopeful. The other lectures on remyelination and stem cells were even more hopeful.

Graeme was a handsome lad and his writing was very sincere. I can't believe he died so young. What's more, Graeme seemed so healthy in his approach to MS, though he did confess to flying out to Eygept early last year for CCSVI treatment to curtail his progressive MS. He seemed to think that the CCSVI had stopped his progression. I suspect he may have been desperate for a cure and was willing to try anything in the hope it would help.

We have lost Graeme and Charles Fox in the last 6 months as a result of progressive MS. There is a ticking clock here for some MSers. Graeme, according to his blog, died within 8 years of his first symptoms. He was officially diagnosed in 2004 and passed away in 2011. That must have been a very agressive disease, but he was till active, travelling and writing. His writing is joyful and sincere, not always about his MS and more often about funny incidents in his past. He didn't seem to be defined by his disease, as so many MS bloggers seem to be.

The old adage that it's always the best people to whom bad things happens seems true. I hope progressive MS becomes treatable soon.; Sunday, May 27, 2012 9:22:00 PM
Anonymous said...: This isn't a question. I just wanted to say thank you for persevering with the blog despite all the hassles. I don't think there's another venue out there quite like this one and it fills an unmet need. This is probably illusory, but I feel better thinking that I know more about what is going wrong with my body rather than less.; Friday, May 25, 2012 3:31:00 PM
Anonymous said...: People who run this blog:

I too want to say thanks. You guys beat anything that so-called larger MS 'societies' offer, though I don't meant to devalue their contribution in any way.

To be honest, some MSers want a sympathetic ear, while others want to be clued up on what's going on and progress in research. I fall into the latter. In that sense this blog is seriously good becuase it provides an education. Education is king, is it not?

I have been watching the MS Life 2012 videos. It really seems the international effort to repair nerve cells is going to pay off in big ways one day, although I did notice Prof G was the most conservative participant on the pannel. I suppose he has learnt that us MSers can be a problematic lot, expecting miracles when small improvements will be suffice.

Good luck to you, and good luck to all living with the disease.; Saturday, May 26, 2012 2:32:00 PM
Save Our Axons said...: Prof G, I have just watched your lecture at MS Life. You talked about a patient of yours called Graeme Wilson, a young man with MS that unfortunately died recently. You said his progressive disease was very aggressive, this despite him being on almost every DMT imaginable.

How commen is sudden death in MS? I take it it's rare but it is a real feature of the disease. The reason why it seems scary is because it seems Graeme Wilson was blogging up until his final days. He was active. So sad.; Saturday, May 26, 2012 4:52:00 PM
Gavin Giovannoni said...: Re: "How commen is sudden death in MS?"

Rare, but under reported. I was at a meeting in London with 14 MSologists and four if us could recall a sudden death amongst the MSers we looked after.

http://multiple-sclerosis-research.blogspot.co.uk/2012/02/sudden-death-in-ms-or-sudmus-1.html

I was very sad when I heard about Graeme. He was an MS activist and did everything possible to get a shot at a treatment that targeted progressive MS. His father gave me permission to dedicate my lecture to his memory. If you read his blog you get an idea how intelligent and sensitive he was and what an impact MS had on his life. If only we all maintained a blog to let the world see the other side?

I hope the MS Life talk gave you some hope regarding progressive MS?; Sunday, May 27, 2012 4:14:00 PM
Gavin Giovannoni said...: Re: "Prof G was the most conservative participant on the pannel."

Correct, not because I don't believe progress will be made, but I know the rate of progress is always far too slow for MSers with progressive disease. I try and justify my stance as one that tries to manage expectations. The backlash we had from the PROMISE2010 programme was overwhelming in that MSers expected treatments. In reality we have only just go to the point of starting trials in MSers to try and test some of the lab work we did as part of that programme.; Sunday, May 27, 2012 4:17:00 PM
Anonymous said...: Calling Vasilis Vasilopoulos, where are you?

I sincerely hope you are okay and have not had a major relapse or suffered any serious complications from your latest CCSVI treatment?; Sunday, May 27, 2012 4:29:00 PM
Vasilis Vasilopoulos said...: Nice of you to ask, thank you. I'm now more than 14 months relapse and fatigue free. It's just getting increasingly disappointing to see that everything about MS continues to be drug-business as usual, and that cases like mine are still accounted to placebo or remission without proper research or even second thought.

No neurologist bothers to explain why all improvements began 24 hours after the procedure, following a clear feeling of a head getting empty. Can anyone?; Sunday, May 27, 2012 6:46:00 PM
Anonymous said...: Everybody who visits this site should listen to the BBC Radio 4 documentary "THE END OF DRUG DISCOVRY".

It's an amazing insight into big pharma.

http://www.bbc.co.uk/radio/player/b01hxh76; Sunday, May 27, 2012 8:06:00 PM
Save Our Axons said...: Hello Prof G.

I did enjoy your lecture and do feel hopeful. The other lectures on remyelination and stem cells were even more hopeful.

Graeme was a handsome lad and his writing was very sincere. I can't believe he died so young. What's more, Graeme seemed so healthy in his approach to MS, though he did confess to flying out to Eygept early last year for CCSVI treatment to curtail his progressive MS. He seemed to think that the CCSVI had stopped his progression. I suspect he may have been desperate for a cure and was willing to try anything in the hope it would help.

We have lost Graeme and Charles Fox in the last 6 months as a result of progressive MS. There is a ticking clock here for some MSers. Graeme, according to his blog, died within 8 years of his first symptoms. He was officially diagnosed in 2004 and passed away in 2011. That must have been a very agressive disease, but he was till active, travelling and writing. His writing is joyful and sincere, not always about his MS and more often about funny incidents in his past. He didn't seem to be defined by his disease, as so many MS bloggers seem to be.

The old adage that it's always the best people to whom bad things happens seems true. I hope progressive MS becomes treatable soon.; Sunday, May 27, 2012 9:22:00 PM
MouseDoctor2 said...: VV
"No neurologist bothers to explain why all improvements began 24 hours after the procedure, following a clear feeling of a head getting empty. Can anyone?"

Placebo effect. I won't comment on the "empty head"! ;-)
We talked to quite a few patients who have had the procedure at MSLife, all with no lasting effect, sadly, except for a more emaciated wallet.; Monday, May 28, 2012 9:57:00 AM
Vasilis Vasilopoulos said...: "I won't comment on the "empty head"! ;-)"

This was easy and cheap. Anyone could see it coming from miles away. Yet you spotted it. Bravo!

"We talked to quite a few patients who have had the procedure at MSLife, all with no lasting effect, sadly, except for a more emaciated wallet."

Your point is great. So if i die of a tumour that was not properly extracted, i can't blame the tumour for my death.

Your drugs offer no lasting effect, but that doesn't change your autoimmune way of thinking.; Monday, May 28, 2012 1:47:00 PM
MouseDoctor said...: What do you mean "your drugs"

How do you know anything about my drugs?...sneeking a peek into the patent literature eh?

Maybe then you will see "my drugs" are not about autoimmunity..

Prof Gs autoimmune way of thinking is one way, my, MD2 way, your way maybe another, but all irrelevant to the point you are really trying to make about CCSVI.; Monday, May 28, 2012 3:59:00 PM
MouseDoctor2 said...: "This was easy and cheap. Anyone could see it coming from miles away. Yet you spotted it. Bravo!"

When presented with an open goal, the temptation to slot it into the old onion bag is too hard to resist. Please excuse my attempts at levity.
But if you're going to keep rubbishing our (and others) research, for which you appear to be unqualified, you must expect us to fight our corner.
Now please stop wasting our time.; Monday, May 28, 2012 4:10:00 PM
MouseDoctor said...: Leo Voisy said
David *******, a 37 year old MS patient from ***********, Tennessee was a score of 8.0 on the Expanded Disability Status Scale (EDSS) when he had the Combination Liberation Therapy and Stem Cell Transplantation at CCSVI Clinic in March of 2012. Having been diagnosed in 1996 he had been in a wheelchair for the past decade without any sensation below the waist or use of his legs. “It was late 2011 and I didn’t have much future to look forward to” says David. “My MS was getting more progressive and ravaging my body. I was diagnosed as an 8.0 on the EDSS scale; 1 being mild symptoms, 10 being death. There were many new lesions on my optic nerves, in my brain and on my spinal cord. My neurologist just told me: ‘be prepared to deteriorate’. I knew that he was telling me I didn’t have much time left, or at least not much with any quality.” David had previously sought out the liberation therapy in 2010 and had it done in a clinic in ****** Georgia. “The Interventional Radiologist........

WAS CUT SHORT BECAUSE TOO MANY WORLDS USED BEFORE THE ADVERT FOR
THE TREATMENT ARRIVED.; Tuesday, May 29, 2012 12:07:00 PM
MouseDoctor said...: Leo Voisy ALSO said

“I went to CCSVI Clinic in ***** without knowing what to expect” says David, “but I basically had one shot left and this was it. I was becoming pretty disabled, and I couldn’t think very clearly”. David was triaged with a clinic intake of other MS patients and had the liberation therapy on March 27, 2012. They also drew bone marrow from his hip bone in the same procedure. When he woke up from the procedure, he again felt the immediate effect of the widening of the veins. “In case anyone doesn’t believe that the liberation therapy works, I can tell them that this is much more than placebo effect.” The MS symptoms described earlier again disappeared. Four days later he had the first of the stem cell injections from the cultured cells taken from his hip bone during the liberation therapy. The first transplant was injected into the area just below his spine. Over the next 4 days he would receive about 100 million stem cells cultured in specific growth factors for differentiated effect
....THEN RAN OUT OF WORDS BEFORE THE ADVERT CAME.; Tuesday, May 29, 2012 12:09:00 PM
MouseDoctor said...: With Regard to the Leo Voisy posts...

My mum reads Mills and Boon and I am sure she could make a story up about someone going to Mr.Benns favourite costume shop (you have to be British and a certain age to get this one) being abducted by aliens and then comming back cured.

Would this get you to go and spend money in Mr Benns shop? Some people would.

This type of anecdote is meaningless and creates a false hope. I suspect this is cynical advertising for some rogue clinic in ***** but they ran out of words (400 max per post) before we got the web page.

However, there is no logic why bone marrow transplantation and ccsvi should be linked except in some quackery.

So David "did not know what to expect" well I can tell you what to expect..........a very big hole in your bank balance. You can also guess what I think the chance of success is.; Tuesday, May 29, 2012 12:22:00 PM
Cyndi said...: Pleased to read of successful Venoplasty :), This is the truth, been 18 mths since my successful treatment. MS labelled people may have Vascular Stenosis, not just in the Az\ygos or JUgular veins, but it is clearly the first place to start looking, given over 30,000 of us have had it checked out already, and it seems to be common enough that in particular at least the left jugular is blocked in many; Tuesday, May 29, 2012 1:37:00 PM
MouseDoctor said...: Cyndi said "this is the truth"

But is it?..with a fore and surname, age, place and state it is usually pretty easy to track a person down in the USA...but ..not so easy (in my 5 minute limit) for this person, although I found people with same surname in the place but hey three hundred million people live in USA

What was easy was to link this person with picture to a peddler of CCSVI and stem cells from a country not in the USA, who has a perchant for self-advertising.

Don't be fooled by testimonials ....my mum could write a load of good-ones.; Tuesday, May 29, 2012 7:54:00 PM