This Is MS Multiple Sclerosis Community: Knowledge & Support

I made an enquiry to the funding body for NHS trials about CCSVI. I received this reply today.

http://constablecomfortable.blogspot.co ... ealth.html

That is disappointing.

This part makes it sound like they only research/support new drug theraphies

The essential health clinic are thoroughly monitoring there results in there trial which is to put to nhs, they hope to have it available on nhs in 2013. Ehc and Edinburgh clinic together are doing there best for us!

I was under the impression that many drugs listed in the Physician Desk Reference (PDR) note, "mechanism of action unknown." Is this the case with most (if not all) MS drugs?

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It's a paradigm shift

I would say they are confusing things. CCSVI is a vascular problem and there is no doubt (or there is little doubt) that angioplasty will fix it. What they mean is that a trial for angioplasty in MS patients is rejected.

This should raise questions about how deeply they have studied the subject and how prepared is the people that made the decision.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

Our best hope with the NHS is currently with Edinburgh/Glasgow. As Carrie says, they are collating their own results in as statistical manner as possible with the aim to present these to the NHS as a trial in it's own right.

We've presented as much as we can to the EHC, Emma's eyesight improvements were a boon because they were measurable and unequivocal and directly related to the procedure.

It's terribly hard to medically quantify "feeling better", "having more energy" etc etc.

This isn't going to happen overnight and there are going to be a lot knocks on the way, but we keep trying.

After reading the article it seems the trial was declined because the science behind CCSVI is not sound enough for the investigators. Many of us believe this to be the case so it is not just "scientists" that are making such statements. Maybe in the future, if those scientists who are actively studying and treating CCSVI can make a good case to the NHS, they will change their mind but until than "no go". I agree EJC, it is extremely hard to quantify the improvements people are reporting after the procedure. Please remember these "improvements" you mentioned were not experienced by everyone and until we have some decent trials set up it is yet to be proven whether the vast majority even experienced "feeling better" and having more energy".

I think if CCSVI had been discovered and was associated with some other condition -- migraines, perhaps, or vision loss, something serious enough to warrant intervention but not as serious as multiple sclerosis -- then the investigators would be having a much easier time investigating.

To get this body to undertake research it would need a lot of background and some serious lobbying. I have not seen these going on in the UK. The EHC is conducting data collection on its subjects, it is us who are paying for the research.
For me its not disappointing but an expected reply.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Perception is a very strange thing.

I read that they were not interested in considering CCSVI until they had trial results and more information to quote directly from the text -

insufficient data on mechanism or efficacy to consider a pragmatic trial

That seems logical and reasonable (and expected).

I see no where in the text that could be interpreted as "not sound".

Where do I start?
Since April 2009, the NHS has run a simple complaints process, which has two stages.

Ask your hospital or trust for a copy of its complaints procedure, which will explain how to proceed. Your first step will normally be to raise the matter (in writing or by speaking to them) with the practitioner, e.g. the nurse or doctor concerned, or with their organisation, which will have a complaints manager. This is called local resolution, and most cases are resolved at this stage.
If you're still unhappy, you can refer the matter to the Parliamentary and Health Service Ombudsman, who is independent of the NHS and government. Call 0345 015 4033

Thanks for the update, Constable.
It appears that the NIH HTA panel that would have discussed this on January 11th is the interventional procedures panel, and they are correct, there is simply not enough published data at this time.

There will be more published in the coming months, as BNAC publishes their results, and the preliminary treatment trials publish. Make sure to send them along to the panel, Constable. I also hope they will consider Dr. Haacke's perfusion and O2 studies, since these point to a definite mechanism of action in angioplasty, which is reoxygenation of the brain.

Here's the list of HTA panels:
http://www.hta.ac.uk/about/People/panels/index.shtml

It's interesting to note that treatment trials were not necessary for treatment of superior vena cava syndrome...and the mechanism is very similar in CCSVI, as stated by Dr. Dake. The only trials necessary were open surgery vs. endovascular....but there was never a disagreement as to whether or not the vein should be opened.
http://www.ncbi.nlm.nih.gov/pubmed/12891100

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hello Cheer,
The forthcoming research will be useful but it will not be sufficient for this UK body. A detailed briefing paper with references and lobbying would be needed. It is a major undertaking should anyone (like CCSVI Alliance ?) take it on.

MarkW wrote: To get this body to undertake research it would need a lot of background and some serious lobbying. I have not seen these going on in the UK.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

I think we're still a little premature for the serious lobbying stage yet.

You need to go armed with hard fact and we need a substantial trial (the EHC is still the closest to this).

Your major selling point to the NHS is money, i.e. how much this will save on drug costs over a patient lifetime, then comes patient response and quality of life.

Unitl there are irrefutable hard numbers you're always going to peeing into the wind.