MS experts in Britain have to open their minds - Telegraph

[MarkW]

'MS experts in Britain have to open their minds' is the page 27 headline in the Health section of The Daily Telegraph, the UK's largest circulation quality daily newspaper.

I hope that CCSVIers in the UK will get of copy and make sure that their MP reads it in front of them.

An online version is:
http://www.telegraph.co.uk/health/83598 ... minds.html
A link to www.ccsvi.org and EHC are also printed and online.

The Daily Telegraph is available in most major cities globally and in the UK carries similar political weight to the New York Times or Washington Post in the USA.

MarkW

[Daisy3]

I look forward to reading the article!

[Drury]

Thanks for letting us know. Look forward to reading it.

[prairiegirl]

I'll look for the article also-- thanks for the post.
(@Drury, so sorry to hear of your daughter's fall etc. Better days ahead!)

[MarkW]

Newspaper has arrived. A positive but balanced full page spread on page 27.

MarkW

[Luvsadonut]

Bought the paper this morning, good informed article without any tub-thumping, which will appeal to Telegraph readers who havent heard of CCSVI. Unfortunately BBC are reporting a negative slant on CCSVI on their Inside Out TV programme, see the post in this forum named - Concerns raised about controversial MS treatment.

Darren.

[MarkW]

I am happy to say that the Daily Telegraph will be be read by many more people of influence than the BBC local programme in a lowly populated area of SW England.
Lessons should be learnt on talking to the media.

MarkW

[TMrox]

Mark congrats for your improvements post-angio and for achieving a balanced news coverage on CCSVI.

Today's CCSVI coverage in the BBC is on the other side of the spectrum...One must wait to see the full local TV programme, but doubt it will be any better than what has been reported in the BBC news bulletin.

http://www.bbc.co.uk/news/health-12637191

Anyway, at least both your story and Karen's story (shown in the BBC) tell that from the patient's point of view, treating CCSVI can relieve many symptoms.

Rox

[Cece]

Congrats, Mark, it is a very balanced and intelligent article in a major newspaper.

[MarkW]

Thanks to Arne:
Thank you Mark for being such a brilliant ambassador for pwCCSVI!
Best Arne

Thanks to Rox:
Mark congrats for your improvements post-angio and for achieving a balanced news coverage on CCSVI.

Thanks to Cece:
Congrats, Mark, it is a very balanced and intelligent article in a major newspaper.

Please stop posting on the BBC South West article post. MSRC is leading their website with the Telegraph article. I realise that non Brits think all the BBC regions are the same. Comparing the Daily Telegraph with BBC South West would be like comparing an article in the Washington Post with a TV program on West Virginian TV. The South West is a lovely part of the UK but it does not have national prominence.

There are lessons to learn from the BBC piece - getting good media coverage takes a lot of effort.

MarkW

[prairiegirl]

getting good media coverage takes a lot of effort.

...and your perseverance in doing so is appreciated by many; thanks, Mark!

[MarkW]

I posted this on the comments for my article. Hope it is of interest to TiMS readers.
MarkW
-----------------
Clinical trials are not simple or cheap to organise. However, every person who undergoes testing and treatment at EHC in Scotland is part of a trial, an open label trial. A full ethical double blind placebo controlled trial is nearly impossible to conduct, simply because the subject would be awake so can feel if balloon venoplasty is conducted on them (I could feel the balloon inflating inside me).
Prof Zamboni is conducting more trials but I am sure they will be challenged by MS experts as not being properly designed.

I hope that some hospitals in the UK will offer testing and balloon venoplasty for CCSVI syndrome to private patients very soon. The results could then be compared with expected progression for people with MS.

The question of the NHS funding this is a political one at a time of budget issues. Talk to your MP with a copy of the Telegraph if that is your goal. I plan to meet my MP.

Over 100,000 people have MS in the UK (MS Trust data) and the average lifetime cost of MS to UK plc is one million pounds per patient (Oxford Uni data). This is the financial case for investigating if treating CCSVI syndrome with balloon venoplasty slows or stops MS progression.
Are MS experts listening with open minds ?

[bretzke]

Over 100,000 people have MS in the UK (MS Trust data) and the average lifetime cost of MS to UK plc is one million pounds per patient (Oxford Uni data). This is the financial case for investigating if treating CCSVI syndrome with balloon venoplasty slows or stops MS progression. Are MS experts listening with open minds ?

Mark- When Zamboni recommended that folks who get CCSVI treatment continue taking their disease modifying drugs, the challenge for getting CCSVI into trials and treatment was made much more difficult. Why should patients continue to take expensive, ineffective and dangerous drugs AND get an unproven treatment at additional cost?

If CCSVI treatment was presented as a more economical alternative "replacement" to current ms drug therapies, I think we might see insurers and national health care agencies take a more serious interest.

Here in the U.S., Ginelya, the latest ms drug, is hitting the marketplace at $48,000 per year, ongoing. Several private clinics in the U.S. are offering CCSVI diagnosis and treatment for $7,500.

Government health providers and private insurers are scrambling to find more affordable health care options. I think any efforts to promote CCSVI in the media should hammer on the potential cost savings.

[Leonard]

Marc,

Good article, congratulations!

The developments are revolutionary and may go a lot further than MS; the impact will be huge and lead to changes as we have never seen before in the entire history of the medicine. Given the major forces that will no doubt surround such disruptive course, there is a good chance that we will see a complete stagnation of the health system in many countries.

In response to your call as to whether MS experts are listening, I have come to realise that perhaps they are in a position just as difficult as ours. Really, if you were a neurologist in hospital X or Y in local town Z, what could you possibly do? What could you do that would have any impact on this huge system with this enormous inertia? Hence, at the end of the day, they got stuck with their main adagio Primum non nocere? Well, then we start to see the signs of stagnation.

As MS is a silent killer, for us speed is of the essence. Certainly the barriers in the medical world between the various disciplines involved are not helpful for a true multi-disciplinary approach and may unnecessarily delay things. There may be issues here that transcend the medical sector where outside help could accelerate the process, not in the least to ensure that in the middle of this conundrum of intellectual, commercial, financial, relational and other pressures, the interests of the patients prevail at all times and avoid that energies in the medical world are spent on abstruse debates of identity and status against true multi-disciplinary cooperation.

I believe a mediation role by politics should be welcomed and could help to build the bridge between the new visions and the perhaps (for good reasons, litigation etc) over-conservative/ protective practices and protocols in use in the medical world.

[MarkW]

Bretzke asks:
When Zamboni recommended that folks who get CCSVI treatment continue taking their disease modifying drugs, the challenge for getting CCSVI into trials and treatment was made much more difficult. Why should patients continue to take expensive, ineffective and dangerous drugs AND get an unproven treatment at additional cost?

MarkW replies:
I do not know what Prof Zamboni was thinking when he made this recommendation. For me the logic of staying with DMT/CRAB drugs is this:
1 - MS may be a combination of vascular and immune system problems, so we may need to treat both. An unknown at this time.
2 - Stopping a drug which is helping the patient is considered risky by medics, pharmacists etc.

I do not see sufficient evidence to stop DMT/CRAB drugs if they are not harming pwMS. At this time I recommend that balloon venoplasty is used for CCSVI syndrome in addition to immune modifying drugs if they are working.

We need far more evidence to replace existing treatments instead of just adding balloon venoplasty for CCSVI syndrome to the treatment regime for MS. Adding a therapy is the path of lesser resistance and we just need to show it is safe and benefits some pwMS. I choose arguments I can win rather than trying to win the whole debate with one speech.

MarkW