Damn we're good! Or are we?

Australia has a very good health system as do the two other countries (USA and UK) that I have been treated in.  But are any of them perfect?  Absolutely not!  In an industry quite as big as health perfection is impossible, especially when there are so many critics, but perfection is a noble goal and even if unattainable it will serve to make a health system as good as it can be.

But for the purposes of this blog I will focus on Australia and to narrow it down a little further, the field of medical research.  Now, Australia has an issue.  There are far more research projects than dollars which means that either some research simply does not get realised or the projects are scaled back to fit in with there available budget.  Neither is ideal and both happen with all too much regularity.

But the question then becomes who decides who gets funding and who doesn't.  In Australia this comes down to four main groups:-

1. Governments - The main source of medical research funding in Australia, both at federal and state level. The main body is the Nation Health and Medical Research Council (NHMRC)
2. Private donors - Although charitable donations are plentiful, In order to be able to make a choice as to whether a research project happens or not, the donation has to be quite sizeable.
3. Charities - Certain charities sponsor medical research and collate smaller donations to distribute them into something more meaningful.
4. Corporate - Will invest heavily in research but only if there is a buck to be made.  For example, big pharma.

One important group missing from this list is patients.  In other countries patients can fund their own treatment but not in Australia.  But this is a post for another time.  At the end of the day, the biggest contributor is the government, followed by charities.  The other two are also very hard to influence as they are autonomous in their decision making.

The next question is how does this money get allocated?  Well, the short answer is badly and I'm going to go back to the example of HSCT on this one.  Certain charitable organisations who are allegedly an authority in this area have stated that they are not interested in funding HSCT for multiple sclerosis and autoimmune diseases until stage 3 trials have been completed overseas.

WHAT!!!!!!  According to the Oxford English dictionary the definition of research is "The  systematic investigation into and study of materials and sources in order to establish facts and reach new conclusions".  If you are simply going to follow in the footsteps of someone else work and do exactly what has already been done you are not going to establish facts because these facts have already been established.  You are not going to reach new conclusions because these conclusions have already been reached.  Essentially this is not research, this is redo. 

In the meantime, while we wait for the trials to be conducted overseas and then conduct our own research, sorry redo, which is at least a three to five year wait, Australians are dying and suffering.

In my next post I'll give you some insights into why we do it this way and more importantly, what we can do to make it better.  Until then, stay well:)

MS societies - Why so anti HSCT?

It is a question that has puzzled many HSCT advocates, both inside and outside of the medical and patient community.  To those of us that have understood the process and talked to people who have gone through the procedure and benefitted from it can't understand.  Myself included.

Now I'm not saying that MS societies all around the world should lay out the red carpet to advocates and aimlessly fund every patient and institution in order to carry out procedures at random.  But a distinct lack of support is extremely puzzling.  I would at least expect the MS societies to point people in the right direction and fund some of the bonafide research studies that are happening.

And why should the MS societies point people in the right direction?  The answer is simple.  If a patient decides to ask about the option of HSCT and are rejected for information by what is considered to be the pinnacle patient body on this matter they can take matters into their own hands and might end up being treated by one of the shonky charlatans that sadly are around only to cash in on peoples misfortune.  The very least that could be done is for that body to recommend the places that are doing it right.

They should also fund the research.  I do believe it is a very long bow to draw to expect anyone to blindly believe a little anecdotal evidence and a few patient stories, especially if they are a professional body.  But, anecdotal evidence and a few patient stories cannot be ignored and it is up to these professional bodies to explore and investigate NOT simply dismiss and ignore.  The best way to investigate is by finding and funding doctors and facilities that are prepared to run official clinical trials to prove or disprove the treatment.  So far these societies have failed to do this. MSA the largest MS charity in Australia has a budget of $33million.  Surely they could use a small portion of this to support the trials?

So why have MS societies and organisations been so anti HSCT?  I need to put in a few disclaimers here.  Firstly,  I don't know that all MS organisations are totally anti HSCT.  I apologise to any that support the treatment.  Secondly, the reasons I am about to list are only theories based on hearsay and (my phrase for the day) anecdotal evidence.  One or all of the reasons might be wrong but it still does not change the fact that most MS societies are sadly lacking in their acceptance of HSCT.

Anyway here are my reasons/theories:-

1. They are getting their advice from the wrong source.  Although MS is a disease that has its symptoms manifest in a neurological way, it is a disease rooted in haematology as it is the immune system (which resides in our blood) causing the problem.  MS is a disease that has traditionally been treated by neurologists and as a result most MS societies are guided by neurologists.  Neurologists simply do not understand HSCT.  It's a bit like getting an electrician to do your plumbing.  Neurologists are ill informed about HSCT and we need to start listening to haematologists about this.
2. They are entrenched deep in the pockets of the pharmaceutical companies.  Big pharma loves charitable support groups.  They are a great way for them to tap directly into the patient market and the association gives them and the drugs they are trying to pedal a high degree of credibility. To ensure their support these cashed up pharmaceutical companies give large charitable donations.  Although HSCT does use drugs in quite a high proportion during the procedure these drugs are only used during the procedure and most of them are relatively cheap.  Big pharma like patients who need to pop an expensive pill every day for the rest of their life.  Currently, MS sufferers are a huge cash cow for them.  If an MS charity supports HSCT, big pharma might pull their funding.
3. MS societies are scared.  After all, for many MS and autoimmune patients, HSCT has been the silver bullet that they have been looking for.  Now it has not worked for everyone but HSCT is significant enough to make a massive impact on the MS community.  Much of what they do would be be made redundant.  But isn't that the way it should be?  Service the organisation and patients so well you're no longer needed?  I mean, if you are contracted to build a house you don't just leave it unfinished so you can keep the job forever.  You finish your house and then find a new one to build.  If am MS society "cured" MS, I believe that organisation and its staff would be in massive demand for another cause.
4. Early failures.  Yes, HSCT had been tried early without much success.  For one reason or another they all failed but as Henry Ford said "Failure is only the opportunity to begin again, only this time more wisely".  And some people have.  Dr Burt in Chicago started off with rat studies and by the time I saw him had treated over 400 patients.  We cannot live in the past.  Just as a small sample group with a positive outcome does not prove a successful treatment a small sample group with a negative outcome does not disprove it.  Alas, the memory of these failures may have a long memory.

Now the real answer may not lie here but I have faith in people and I believe that the people involved with MS charities sincerely are trying to do the right thing so I'm putting my faith in points 1 and 4.  There are ways we can do this.  The new organisation I am involved in is called Reset Australia.  Our main aim at the moment is to raise the money to fund the stage 3 trials for all autoimmune diseases.  If you want to do so you can here:-

http://www.gofundme.com/72o5z0

Until next time, stay well:)

Donations Please

In 2012 I travelled to Chicago for a hematopioetic stem cell transplant (HSCT) to treat my Chronic Inflammatory Demyelinating polyneuropathy (CIDP).  I had to go to Chicago because at the time this treatment was unavailable in Australia.  Two years later, this treatment is still unavailable to most people in Australia and it doesn't have to be.  For the people that know me you know how remarkable and effective this treatment has been in giving me back my life.  If you don't know you can check out my video here:-

CIDP HSCT Story

HSCT is nothing new.  There are many haematological disorders and cancers that have been treated by HSCT since the 1960's.  For various reasons it has not been used for autoimmune diseases until recently.  And yes, I say autoimmune disease not just CIDP because it can be used to treat most serious autoimmune diseases from Crohn's disease to Multiple Sclerosis.

The good news is that it is on the radar.  We know that eventually it will be the gold standard treatment for these types of disease but for now we have to focus on proving its effectiveness.  As Australians we need to ask the question of whether we want to be one of the leaders in this research or do we want to be dragging our feet ten years behind the rest of the world including Israel, Russia and India.

The work we do here in Australia will also have international benefit.  The more centres around the world that are doing trials, the more data we can collect ,the more statistically correct it will be and faster we can have the trials completed.

In order to not be left behind we are looking at setting up a not-for-profit organisation that can be used to raise money, create awareness and lobby the government to support stage three trials which will give us the proof to get this treatment available for all who need it.  The first step for us is to finance the startup costs.  You can help do this by leaving a donation on the GoFundMe page linked below:-

GoFundMe

Any funds collected over and above the startup costs will go into promoting stage three trials.

Make no mistake, the outcome of these trials will have a significant impact on this country and the world.  It has the potential to be the most significant medical advancement since chemotherapy treatments became available in the 1950's.

Please give generously.  The thousands of people with severe autoimmune diseases will thank you for it.

Stay well:)

Great news!

It's no secret that Australia is sorely behind the rest of the world in promoting HSCT as a treatment for autoimmune diseases.  The article I blogged about a couple of weeks ago just proves exactly how ignorant we are too.  It is embarrassing that as a highly developed country that claims to have one of the best health care systems in the world and also be a self proclaimed leader in medical research we are left wanting.

BUT it is changing.  The trial at St Vincent's hospital in Sydney is proof of this.  They have now done about 20 scleroderma patients, 6 MS patients and they have just commenced the process on the first CIDP patient.  While this is great news it can also be used to highlight the short comings of the Australian system.

A friend of mine and fellow CIDP patient Peter Langford, more commonly known as Pops (he jokes even his mother calls him Pops) has just had his chemo mobilisation.  Pops and I met on line in September of 2011 and found we both had CIDP and we were interested in HSCT.  Now I decided to go for the treatment in Chicago.  Unfortunately for Pops he couldn't afford to go to Chicago so he looked high and low for an Australian option which he found at St Vincent's with Dr John Moore.

Now about six months after I had started looking into HSCT I had gone to Chicago, had my transplant and returned to Australia.  Pops is still waiting after two years, but at least the end is in sight.  He seemed to get through his mobilisation OK too, so hopefully a month from now he will be back home recovering from his transplant.  It has been tough for him too, enduring false positive results for HTLV1 virus and just undergoing the complete battery of tests that we all have to do for HSCT.

The issue is that Pops has had to not just wait, but suffer and endure his disease unnecessarily for nearly two years whilst at the same time costing time and money with expensive, medicare approved treatments.  Australia, you need to get your act together, stop procrastinating and start saving lives.

Until next time, stay well:)

Public perception?

Recently a friend and fellow HSCT survivor (in this case MS) alerted me this article about a very new trial that is happening in Sydney with HSCT for autoimmune diseases.  Firstly I just want to say that starting a treatment such as this in Sydney is fantastic for all Australians.  In an international arena our politicians are very good at lauding Australia as being one of the best but with HSCT for autoimmune diseases we have been caught dragging our feet.

But it is this article I want to focus on now.

http://www.theage.com.au/national/radical-stem-cell-trial-offers-hope-for-ms-sufferers-20131026-2w8n6.html

For those that don't know, The Age is a very popular and respected newspaper in Australia and while it is great that we have a trial here in Australia and it garnering publicity, I had huge problems with the inaccuracies of the article.  I will list them below:-

1. They make the procedure sound so dangerous.  Although it is a hard procedure to endure, it is relatively safe.  The Dr Burt trials in Chicago boast a safety record that is better than that of more conventional approved therapies and leaving the disease unchecked.
2. Use of the word "cancer".  Now cancer is nasty you'll get no argument from me there.  But the journalist makes it sounds like cancer is the worst thing, bar none, that you can suffer from by a long shot.  Well just like cancer, MS can also kill and the time in-between now and your final demise ain't pretty either.  And MS is not the only one.  There are thousands of non cancer diseases that are severely debilitating or killers too.
3. Quote from the article "If he survives long enough - that is, if a piece of dust doesn't get in his eye and spark a fatal infection......" Come On!!!!!!  That is just fear mongering.  Anyone can get an infection from dust in the eyes.  In fact it is less likely for a HSCT patient as they are kept in a sterile hospital ward, not a construction site.  And even if an infection does take hold, qualified staff are on hand to treat the patient.
4. The time table is all wrong.  The stage of neutropenia is about eight days.  Neutropenia is when there is no active immune blood cells in the body.  The article makes it feel like weeks and stem cell infusion occurs after a long period of neutropenia.  This is incorrect.  The stem cells are actually administered a couple of days before your white cell count reaches zero.
5. It is made to sound like only a few people have gone through the process.  This is not true.  Excluding Australia, I know of seven different facilities that are providing the service and that could well be more and Dr Burt in Chicago has completed over 500 for a range of autoimmune diseases and his trials have reached a stage 3 randomised phase.
6. The article also makes it feel like it is a procedure of last resort.  Simply not true.  HSCT is most successful and most effective if received early in the disease progression.

However, after thinking about it a bit more I was left wondering if this is not just a factually incorrect piece but a reflection of what society thinks of the procedure?  It is hard to judge as I am one of the few who swim very close to the centre of this small circle so to try and foster a perspective from the outside looking in is quite difficult.  So at the least I hope that the people that will read this post will keep an open mind about the procedure of which I will say I am a huge advocate of.  If you want to know why, just read some of my earlier posts.

Stay well:)

Tragedy

It is with great sadness that today I am writing about a fellow HSCT patient that passed away recently after complications.  I did not know Gabriella.  I hadn't even talked to her but the HSCT for autoimmune diseases community is still quite small so I certainly knew of her.

However, as an HSCT patient and advocate of the procedure it raises many questions.  Some of these discussion points can be of a rather "sticky" nature but I think it is important to raise these questions and talk about them.  Essentially we need to tackle the proverbial elephant in the room.  My points are:-

• Is the procedure safe and is it worth the risk given the potential benefit?

Personally I feel that given the evidence that we now have available it is a relatively safe procedure.  With any medical procedure, from a simple blood test to open heart surgery there is a risk.  The fact that other facilities offering the procedure have not changed their practices at all says to me that is not the case.

• Is the institution in India to blame?

Honestly I can't answer this.  I have never been to India to see the facility or meet the doctors involved. In fact I have never even researched the hospital so I can't and won't give an opinion.  However, the hospital has shut down its HSCT unit pending an investigation.  I can only think this is a good thing.  Carrying on in a cavalier fashion as if nothing had happened would be negligent. 

• Who else might be to blame?

Blame is such an ugly word.  Blame assumes that someone was at fault and that might not be the case at all.  It could very well be that all protocol was followed thoroughly and her death was nothing more than a tragedy.  I am actually going to use the word responsible as there is not an assumption of guilt on those who are responsible.  So who is responsible?

Now before you condemn me as an insensitive evil pig please read to the end as I will explain myself.  The person most responsible is the patient, in this case Gabriella.  "My Gosh" I hear you say.  "Wasn't she the victim?"  Well, yes she was.  But she was also the one who decided to go through with the procedure.  She would have known the risks and would have weighed up the pros and cons, the risks and benefits and would have made her decision.

I know this because it was the thought process that I went through before I left for Chicago.  I had weighed up all the variable and outcomes I could think of and yes.  The fact I could die did play a part. Some people thought I might be mad.  That I was gambling with my life.  I could not have thought of it more differently.  Sure, there was a choice not to have the procedure.  But that choice involved still having CIDP.  Living with pain.  An inability to move properly and a massively dysfunctional sense of feel and touch coupled with balance issues.  When this is you situation, you start to think very differently about your situation.

In a similar way to me having brain surgery, I went into my transplant with my eyes wide open.  I am sure that Gabriella did too.  I also have to say that if I did die due to my transplant I would not have wanted anyone else to be responsible.  I made the decision and I was prepared to take responsibility for whatever the outcome.  I had even prepared a series of video messages for a variety of people and one of the points I wanted to make was that I was the one responsible.  The last thing I wanted was for people to go around blaming each other for my decision.  And whilst I got the blessing to go ahead with it from close friends and family, as well as past patients who advocated strongly for the procedure, The final decision was mine and mine alone.

• Would it have stopped me having my transplant had this happened to prior to me going to Chicago?

It is a tough one to answer because I have the benefit of hindsight.  I think I would have still gone through with it.  I would have looked at the mortality statistical data for my chosen institution and decided it was the right decision.


It is never easy contracting a nasty auto immune disease like CIDP or MS.  We just have to make the best decisions that are available to us at the time.  I for one believe that HSCT is a warranted and viable option for autoimmune diseases and I would still recommend it to anyone who is in a similar position to what I was.  Gabriella, I hope that you can now rest in peace and I also hope that we can learn from your experience so your passing was not in vain.

Stay well:)

Moving Mountains

Hi peeps,

You all have to read this story and then go to the link in the post and show your disappointment.  No matter what country you live in, it all helps.  They were going to interview me as part of their story but I guess that isn't happening any more:(  It is a hugely important message and every message on the website counts.

http://www.movingmountains2013.com/could-two-minutes-potentially-change-someones-life/

Stay well:)

Dr Burt

Dr Burt is one of the best doctor I have ever had the pleasure of consulting with.  After all, he is the doctor responsible for my HSCT which has quite simply changed my life.  However, even after all the good work he has done there are still naysayers out there that are very sceptical of the process.  They should watch this video as it identifies the benefits of HSCT and answers most of the questions that the critics raise.  This is not me saying it.  This is one of the most qualified and forward thinking doctors in this field with an outstanding reputation to boot.  Hopefully getting this message out will allow the treatment to become much more available to more people and make a huge difference in the lives of many.

Enjoy and stay well:)

http://www.youtube.com/watch?v=5SmLUYomArI

http://www.youtube.com/watch?v=rOlk_-5QcDI

Chad Pfefer

What can I say.  I can relate to Chads story perfectly.  Every point he makes he articulates perfectly and I agree with all of them especially the one he makes about which doctor treats which disease.  Watch the videos to find out what he said.  Stay well:)

Here is Chad's speech 

Part 1 

http://www.youtube.com/watch?v=s3ohnu1w_Jg

Part 2 

http://www.youtube.com/watch?v=H5Mvx39g6tI

Part 3

http://www.youtube.com/watch?v=SmV1rfOtKhk 

Myeloablative vs Non-Myeloablative

Myeloablative (MB) vs Non-Myeloablative (NMB)?  If you are considering HSCT this is a question you will probably end up contemplating.  There are supporters of both.  Dr Richard Burt from North Western Hospital prefers the NMB protocol whereas others like HSCT recipient George Goss advocate for the MB.

The question is who is right and why?  Personally I believe that there is a room for both.  And here is why.  To start I would just like to add that the theories and points I'm laying out in this post are my own and have not been ratified by any research or medically qualified people.  But it does make sense.  Well to me anyway.

The MB procedure is where the entire bone marrow is attacked by the chemotherapy regime.  This destroys all blood producing cells.  The NMB targets the white cells and does not completely destroy the bone marrow.  The theory being that the fault with the immune system lies in the white cells and destroying them will destroy the immune problem too.  The MB in destroying the bone marrow also destroys the white blood cells and the immune system.

To begin with I'm going to do a short list of the pros and cons of each procedure.

MB Pros

• Destroying the bone marrow will completely destroy the immune system.  It is much more thorough.
• It has been successful in treating auto immune diseases.

MB Cons

• The chemo treatment is much more severe and intense
• There is an increased risk of complications
• Recovery is longer

NMB Pros

• It is less invasive than the MB protocol
• It has been successful in treating auto immune diseases.

NMB Cons

• It is not as successful as the MB

I will give you two examples.  First, my favourite subject, Me!  I had the NMB and it worked for me really well and I'm not the only one.  But when you look at diseases such as multiple sclerosis, the selection criteria is much more strict for the North Western NMB protocol.  It is their understanding that once your EDSS score (A score out of 10 to that measures degree of disability) is greater than 6, HSCT is ineffective.

That brings me onto my second example.  Carmel Turner had MS and her EDSS was 7 which would have rendered her ineligible for the North Western trial.  She had the MB HSCT using the BEAM protocol and just like mine worked for me, hers worked for her.

That brings me onto attempting to answer the question of which protocol for you if you are considering HSCT for an autoimmune disease.  Now bear with me here, this is the point where I'm creating my own hypotheses.  I have no scientific data to back these up.  But I believe there are a number of factors that one should consider:

• Severity of disease.  If your disease is severely debilitating a stronger approach may be considered.
• Longevity of disease.  The longer you have had a disease the more entrenched it will become in your body and the stronger the treatment may need to be.
• Type of disease.  I believe that if the disease is predominantly inflammatory in nature then the NMB protocol will work.  If the diseases has progressed beyond an inflammatory stage a stronger regime will probably be required

I would love to see a medical researcher test these hypotheses to see if I'm right and if I'm not, are there any discernible patterns?  Believe me the NMB was bad enough.  You wouldn't want to go through the MB protocol unless you had to.  Well, I hope that this does inspire some educated discussion.  Until next time, stay well:)

A Nice Meeting

Today I had a lovely meeting with fellow HSCT survivor Carmel Turner.  Carmel had Multiple Sclerosis and had her SCT about a year ago.  Since then she has enjoyed a steady recovery which is fantastic for her.  We had a great chat, mainly about all things neurological and SCT and the problems with the Australian medical industry.

I admire Carmel.  I had to work really hard to get myself to Chicago for an SCT.  Ironically I think Carmel had to fight even harder than I did to get herself in a program right here in Australia.  I think it just goes to show that although there are many good things about the Australian health care system one of their problems is the conservative ideology and antiquated thinking.  Why is a life saving and life improving procedure so hard to have done?

Why should out dated methodologies be promoted against newer methods that have been proven in academic and medical literature.  Albeit overseas.  The thing is the papers and the studies are legitimate and if I can find them then surely anyone (and by anyone I mean doctors) should be able to find them too.  After all, aren't doctors supposed to stay abreast of medical innovation?  If I was a doctor I think I would be extremely excited for both medicine and my patients if I learned this information.

I congratulate Carmel for getting it done.  Being sick and having treatment is difficult enough but with the help of her husband Scott she battled the administration and did not just get what she wanted, she got what she needed.  Unfortunately, there are many that don't.  Anyway, it was great to meet her and wonderful to see first hand how HSCT has helped someone.  Until next time, stay well:)

Why so hard?

I made a new Facebook friend this week.  A lady from Canberra who had an HSCT for MS about a year ago.  We have chatted briefly, and I find these conversations with all patient in this or similar situations both inspiring and informative.  But we both had a big whinge about one thing.  Why is it so hard to get into a program for a stem cell transplant?  In Australia the medical fraternity turns its nose up at the procedure which I think is sad.  In this post I will give reasons why I believe this to be the case, and why I believe these reasons to be unfounded.  I will also give some tips on what we as patients can do to combat this.

First I'd like to tell you a story that my new Facebook friend told me.  The patient slated to be the next HSCT recipient after her (who also suffered from  MS) found that bureaucracy and procedure was effectively stone walling her from receiving the treatment.  The hospital that she was going to had ethical concerns and had to run it past their ethics committee. After a year and marked deterioration she finally got the nod.  Unfortunately, a week before she was due to start treatment she passed away.  So congratulations to the administrators and bureaucrats in the hospital concerned for killing the patient.  At least you did it ethically.  (For all the pen pushing paperwork loving hospital administrators out there that are slightly detached from the real world, that was sarcasm)  THe other really annoying thing about the wait and feet dragging is that the evidence shows that the earlier one get an HSCT, the more positive the outcome, which brings me on to my first point:-

• With my current crop of doctors in Australia, they probably wouldn't even consider an HSCT until I was in a wheel chair and needed a ventilator.  Now, as I've said before, your body can repair damaged cells, but it cannot replace destroyed ones.  If I was completely wheel chair bound my nerves would probably be completely destroyed and unrecoverable.  My meagre improvement would inspire no confidence in the doctors to try again with other patients.  Hey, I'm willing to give it a go, and I don't want to wait I want it now while I still have a chance at a reasonable recovery.

• It is perceived as dangerous.  Well, so is going skiing, eating raw fish, driving a car or smoking and we can do any of those things when ever we like.  It is not a full blown bone marrow transplant which requires far more chemo and radiation therapy and also normally a donor which adds much more danger to the process.  The most common used protocol for HSCT for autoimmune disease carries a mortality rate of <1%.  Besides, shouldn't that be my decision?  I get that I might die, even worse I could end up in a wheel chair in constant pain and needing too be fed through a tube for the rest of my life.  Still, I am willing to take the risk.

• It's not embryonic stem cells.  Embryonic stem cell research is wrapped in controversy, and although I am a supporter, I fully understand why.  But that is a debate for another time.  HSCT has nothing to do with embryonics.  The process is autologous.  Meaning the donor and recipient are the same person, so unless we go back in time 37 odd years and harvest my stem cells when I was but a wee blastocyst, the ethical implications simply do not apply.  Adult stem cells are a completely different ball game.

• The snake oil salesmen ruin it for everyone.  There are dozens of bogus clinics and individuals out there peddling the promise of stem cells for nothing more than their own financial gain.  Check out the following link.  CBS snake oil.  One of the problems with this piece is that it does not refer in any way shape or form to the bonafide doctors and hospitals, such as doctor Burt, that are genuinely using the technology to help people.  The technology is out there, but it needs to be used right.  The snake oil salesmen ruin it for everyone.

• Alright, let me be a conspiracy theorist here for a second.  Big pharmaceuticals don't want this technology to come to light.  Why?  It is much more profitable to have sick people needing a bucket load of drugs everyday rather than being "cured" by a one time treatment and not needing any more drugs.  People with autoimmune diseases take a lot of expensive medications, many of which are ineffective.  But the pharmaceutical companies prefer this because it is much more profitable, and by identifying the snake oil salesmen, and discrediting them to discredit the whole stem cell movement.  The CBS piece I linked to above says that there is no known stem cell therapy for MS. This simply isn't true.  Check this article out.  To me, the CBS piece stinks of the pharmaceutical companies trying to discredit the stem cell movement through the back door.

So as patients how can we promote stem cell treatments?  First, challenge your doctor(s).  You may feel like you're banging your head against a brick wall, but if enough people are persistent enough the doctors will not be able to ignore it.  They will have to do their research and learn the truth about stem cells.

Second, do your research.  There are genuine bonafide institutions out there offering legitimate stem cell solutions.  I believe 100% that Dr Burt's studies at North Western is one of them.  However, you need to keep an open mind so you can see through the charlatans.  Try to keep an open mind.  When you are sick it is easy to cling to anyone that is offering hope.  The key is to weed out those focusing on false hope and those offering real hope.  Use your common sense.  Chances are if the clinic is situated on a shopping strip between a subway and a seven eleven, it is probably bogus.  Look for genuine studies published in reputable medical publications to corroborate the institution you are looking at.

I could ramble on about this subject for ages, so I'll think I will stop there.  Until next time, stay well:)

Take a look

Firstly, thanks to Eddie for posting this link on Facebook.  It gives some really great insights into the HSCT process and although it is MS and not CIDP focussed there is probably more to learn about it as the trials for MS are far more advanced than for CIDP.

Personally, I think what resonates most with me about this post is the decision making process that lead to the author deciding to go ahead with the trial.  This will probably give you all some insights into why I decided to pursue this corse of treatment.  It is also full of useful links and graphs which will explain almost all the intricacies of HSTC. Until next time, stay well:)

Oh yeah, the link:-

http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html

Lawyers, back off!

I was on a patient chat room the other day and a fellow patient mentioned a friend who had had a operation called the "liberation procedure".  The patient in question had multiple sclerosis (MS), and as CIDP and MS are quite similar (both demylenating and auto immune) my interest had been peaked so I did some more research.

Unfortunately, I have to admit that I don't think that the liberation procedure would be suitable for CIDP patients as it is supposed to relieve pressure on the brain stem by widening the veins in the neck.  The demylenation in CIDP patients is in the peripheral nerves.

But I was astounded by some of the things I read.  But before I tell you what let me give you a little background.  The liberation procedure is basically angioplasty in the veins in the neck.  It is a common procedure to treat other vascular problems.  It is considered relatively safe.

Yet, in many western hospitals the procedure is being disallowed.  Why? you may ask.  Because the evidence points to the procedure not working?  Or maybe there are not enough doctors trained in the procedure?  How about the hospitals are ill-equipped to perform such an operation?

All reasonable answers, but all wrong.  The real reason is because of the lawyers protecting hospitals and doctors from litigation.  And what do lawyers know about medicine?  Nothing.  What do they know about treating sick people? Nothing.  And what do they know about being sick?  Nothing.  And no.  That common cold you thought was the mother of all cases of swine flu doesn't count.

MS is a debilitating, degenerative and eventually fatal disease.  Let me try and paint a picture for you.  You live in a wheel chair, you cannot feed or bathe yourself.  You can't even wipe your own bum, and you are only going to get worse until you die.

But there is hope.  You hear of a procedure that has the potential to halt the progress of your disease, maybe even reverse it.  You even find a qualified doctor prepared to do the procedure for you.  But wait. There is a problem.  Because a lawyer is scared of the hospital being sued he puts a stop to the operation.  You, as the patient are now condemned to a life of disability, and your one hope of wrestling back some form of independence and quality of life has been squashed by a lawyer.

If lawyers are scared of being sued for malfeasance, maybe as patients we should sue them for nonfeasance.  If failure to act when you have the means and capability to do so leads to someone having a substantial decrease in their quality of life, surely they should have a right to seek reparations?

As a patient I think I should have the right to decide my own destiny and choose my own treatment options.  I take the risks and if something goes wrong, I pay the price.  I am of sound mind, and I can make my own decisions.  I don't need someone to do it for me.  Especially someone with no idea.  Lawyers, back off!  Until next time, stay well:)

Inspiring

When I was 20 a t-shirt like this would have simply made me cringe.  My attitude was extremely close minded, and although I was battling my own demons at the time I still had no empathy.  To tell the truth, I am almost embarrassed about the way I felt.

Now, is a different story though.  I am genuinely moved by this.  Over the last few years I have met a lot of people with one illness or another, and one thing that remains constant is the courage and stoic persistence they have to battle their problems, and maintain a positive attitude towards life.

To me, it is both motivational and inspirational.  I feed off their strength and courage, and in return, I hope they can feed off mine.  The t-shirt was created to raise money and awareness for multiple sclerosis.  I have attached a picture of it below, and if you desire, you can purchase it at the following address: MSmagnet

Stay well:)