MediTest
27 Apr 2018
Author
D W
Title

A Statement from MS Australia: an expected knee-jerk

Body

The Catalyst programme recently broadcast in Australia has provoked a knee-jerk reaction by MS Australia. http://www.mssociety.org.au/documents/news/Catalyst-statement-120824.pdf This 'statement' purports to be authoritative. It is anonymous. It leaves no access for comment or reply. It is unreferenced.

Comments

David, When I posted on a well-known U.S. forum a few years ago, it caused a FIRESTORM of negativity and downright vile reaction.  A moderator on that board took it upon herself to attack me personally and then shut down the thread, which pushed it off the radar.Fortunately, a few people from that site saw the information was of value and they arrived here to find peace and sanity. I have said this before, but you've provided another opportunity  to go on record. Yes, big pharma has a vested interest in keeping us ill, on expensive, virtually useless medications.  But, I think the bigger problem is the ego-issue. So many people in the medical professions have 'always done it this way'. In the case of physicians,  they parrot what they 'learned in medical school', even if that's forty years ago.  They stick their fingers in their ears and say la-la-la-la-la whenever someone voices a new theory or a new approach. The result is they do not stand up and fight for their patients, or that new approach.  And, yes, they've grown accustomed to and fond of the perks provided by big pharma, such as free meds, theatre tickets and 'sponsored' vacations to luxury destinations.It was that young neuro, fresh out of med school, who, along with a perky young physician in charge of a major infectious disease program here in Chicago, who laughed in my face and snickered to each other ("Yeah, right; in ten years we'll all be treating MS with ANTIBIOTICS!  Hahahahaha")  who caused me to dig my heels in on this protocol.  Here I am, seven years later, walking and talking and living normally.  And, the use of antibiotics for MS is gaining ground, whether it's minocycline alone or the CAP.  But those two now have eight years into their careers and they will likely spend the next twenty or thirty repeating that scene with me.  They will tell their MS patients to adjust, to learn to live with it, to stick themselves with unnecessary needles full of frightening chemicals that do nothing to kill the cause of their disease.  THEY are the people I really fear in all this, because they are so emotionally invested in being IN CHARGE, they've forgotten how to be seekers and scientists.  They got the sheepskin, so now they've achieved all they planned to achieve in life.Okay, down off the soapbox.  If you ever need a high-heel wearing, stick-shift driving, energetic, non-depressed, MS patient to prove this thing really does work, just whistle.  I'll be there.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Nothing in the UK MS Society, although the site looks eerily similar, main colours orange and black.  The main news here was the “temporary” withdrawal of Campath from the market and the use of Cognitive Behavioural Therapy for people to get used to having MS!  (Yippee, at last something that Fat Face could offer me!!)...........................SarahA Journey through Light and Shadow     

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I think the reason MS Australia has responded this way is that the Catalyst program has started an avalanche of interest in the Cpn protocols that we can hardly imagine.The day I saw my GP (who hadn't at that point seen the Catalyst segment) he told me that he had another MS patient booked in to see him the next day (making it 100% of his MS patients in this locality) and others booked in at his other practice. I gave him a large number of pages printed out from this site & told him to read them. People I hardly know have asked if I have seen the Catalyst story. A lot of people thought it was a story about a new trial; it has caused a lot of positive interest because it JUST SEEMS LOGICAL!CCSVI isn't popular with the Society but they are publishing a bit more about it as the interest & public knowledge is spreading. But what they are publishing isn't supportive; needs more study, doesn't always work etc. DMD get support & positive feedback- the drug companies provide assistance to societies like MS Australia. And the MS Clinics too get funding from the MS Society's & drug companies. Nobody wins financially with the Cpn protocol but it might just be saving lives.I wrote to the producers of Catalyst who replied that they are already working on a follow up story. The MS Society wouldn't exist if we all got better. Nice thought really.

Ah yes, don't get me started on MS Australia. I overheard the top neuro in Australia who is closely linked with them tell his staff about a workshop involving physiotherapists, nutritionists, scientists etc. that he wouldn't be concerned promoting all that 'spooky stuff' to his patients. I agree with Mac - stubborn, ignorant, set in their ways and highly driven by pharmaceutical companies.The good news is word is slowly spreading via 'the underground' and I personally know of a few people who are taking CAP and other infection/viral treatments on board. One day we'll win :-)

It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)CFS/FM (2001); 'probable' MS; Cpn; EBV; HHV6; Chronic sinusitis/bronchitis/allergies 

AJ

 

I couldn't agree more with what everyone has said. 
 

I think the statement epitomises the closed-mindedness of MS societies worldwide. I chose to post a comment on the catalyst website a few days after the story aired because I was rather annoyed at the inaccuracy of the press release from the MS society.

I think the resistance to investigate CPn all comes back to corporate greed. Billions of dollars of profit are under threat due to the high price of patented MS drugs compared with the relatively low cost of antibiotics. Since research funds often come from drug companies, there in lies the problem.
 
There is also a child-like tantrum taking place amongst the medical fraternity. Diseases previously lumped into the autoimmune basket, because no one had a clue what to do, now have a plausible cause. Paradigms are being challenged and people are having to accept they might have been wrong, and might have failed to provide optimal patient care (not due to personal fault, but just a lack of knowledge). It would seem that instead of graciously admitting this, many are choosing to desperately try and hold on to their outdated paradigms. Money and egos are at stake. History has repeatedly proven that mankind's efforts to protect these two things often results in harm to others.
 
Positively, however, we all have the capacity to carry on in our hopeful efforts to be examples of what appropriate antibiotics and supplements can do. This applies to people fortunate enough to have open-minded Doctors already, those who are still searching for them, and those who are going it alone. Eventually more research evidence will exist. Initially it will just be in the form of stable, healthy patients. Then they will listen, and then the clinical trials and much called for 'data' and 'statistics' will follow. 

Mysterious symptoms from 1997-2011. MS Dx 2011, Lyme and co-infections Dx 2013, Mould sickness Dx 2014. Cpn CAP 12 months, Lyme CAP 10 months, mould treatment 6 months, Cpn/Lyme CAP currently, lots of supplements for years.

David though you did an excellent job in this programme I am also not surprised the MS society reacted as it did neveremind if it's Australian society or British or US or... They will always react this way as they are influenced by the Pharmacy industry. I am very optimistic about abx treatment of MS but very pesimistic about MS societies and Pharmacy. I don't think the Pharmacy gives up enormous profit and they will fight, bite, kick. Who am I? I am nobody, no one of any importance and I was blocked here in the site for 3 months by someone who attacked this site. I am only the person who had had MS for more than 30 years before the starting abx. A person who had never taken any CRABs an I was telling it here openly. And what's more the progression of my MS was stopped and I am still improving. So suddenly I started to be a person of importance for someone. Thanks to Jim who updated the site the problem was solved.  I know you will continue in your excellent work and all the MSers who took or take abx and stopped the progression and are improving are the evidence that you do right work  which is more than all those anonymous articles. I think the author is afraid to undersign because if sometimes the situation changes pro abx...    

MS for more than 30 years, WP since July 08, break Jan 09-March 09. NAC 2x600mg, Doxy 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDN, supplements.Since May 2013 without abx.

Yesterday I gritted my teeth and rejoined the British MS Society, to post the Catalyst segment and see what would happen.  I fully expected not to last the day, as happened a few years ago.  However, I am still there, so it would be nice if a few British members of this site would be willing to help keep the post active. There was an Australian moderator there yesterday, by the name of Belinda, maybe brought in to guard against those nasty antibiotics, so I think Australian people would be welcome as well, maybe even Americans.  She kind of told me off, so I thought the worst, but nothing more was said: perhaps times are at last changing!...........................SarahA Journey through Light and Shadow  

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

That is the last time that I will engage with that place; there are some who just patrol the place to sniff out and demean those who have done something different than the norm.Now I know why you got better Sarah, either you had "benign" MS, something else entirely or went into spontaneous remission. Or, fatface was wrong with his diagnosis!You couldn't make it up could you?After reading their self righteous tripe I am more likely to erupt into spontaneous combustion - than goodness for the sanity here. Laughing

speedbird

D W

Speedbird, I thought it wonderful - an internet diagnosis, unseen, in ten minutes! Gosh! The clinical acumen! But please don't spontaneously combust!

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

D W

Mac: enjoy your flaneurie.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

AJ

Happy to join - anything to raise awareness. I'll do my best not to ruffle any feathers. 

Mysterious symptoms from 1997-2011. MS Dx 2011, Lyme and co-infections Dx 2013, Mould sickness Dx 2014. Cpn CAP 12 months, Lyme CAP 10 months, mould treatment 6 months, Cpn/Lyme CAP currently, lots of supplements for years.

Hi David,Yes, I expect the establishment to react against this for a long time. In the mean time, those of us affected directly will, like you, do our best to help ourselves and others.As a microbiologost, I wonder if you'd care to comment on a post I just made regarding the CPn lifecycle and how it relates to treatment. Thanks for all your work, and your appearance in the catalyst program, which I appreciate.Cheers,Graeme

Speedbird, well, I survived the shock of my surprise online diagnosis and luckily I didn’t spontaneously combust either!There were more replies this morning or overnight and three were sensible and asking for help, so I hav replied to them and used the latest rather rude reply by the divine Belinda to call it a day.  Two days must be a record!.........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I have never seen so many Freudian projections in one place! (MS Society UK)  I have cancelled my subscription to my own thread!........................SarahA Journey through Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

D W

In 2007 I wrote a brief essay on paradigm shift. I think I've posted a link to it previously, but there may be some newer people to whom it might be of interest. http://www.davidwheldon.co.uk/Sea-changes.pdf  It is called Sea-Change, Paradigm-Shift and Angst. And there is certainly quite a lot of angst in certain quarters at the moment.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Lt. Lab Rat here, reporting for duty (though really I have never left).  I just reread your delightful (ha!) essay.  I, too, can never, never go back to those places and hear those people with their mouths full of the party line and money.  The MS specialists, that is.  On any day I would spend  whatever it took in time and effort to explain over and over about our life-saving site.  David and Sarah - thank you, thank you.Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hi all,I get the frustration with the establishment - but remember, these people aren't evil. Most of them are not "on the take" and are doing their best, it's just that they *believe* something different than most of us do. The power of beliefs over our own minds and those of others is can be very very strong. Evidence has very little to do with it, until it is absolutely overwhelming - see confirmation bias.Most of us would be just as blinded by our own beliefs in other domains.Cheers,Graeme

AJ

Thanks for posting the link to your essay, DW. Such a considered analysis of why the world resists new lines of thought. I'm so thankful I'm amongst those willing to challenge long held beliefs (because what might have been otherwise?). I'm more thankful, however, that people like yourself have never waivered in your efforts to shift the paradigm surrounding MS. Thank you. I'm sure eventually angst will give way to acceptance.

Mysterious symptoms from 1997-2011. MS Dx 2011, Lyme and co-infections Dx 2013, Mould sickness Dx 2014. Cpn CAP 12 months, Lyme CAP 10 months, mould treatment 6 months, Cpn/Lyme CAP currently, lots of supplements for years.

This is an interesting thread.  It highlights a discussion my husband and I have fairly often regarding the mindset of doctors (neurologists in particular) where we begin with the hope that I can convince my lovely neuro to accept my different viewpoint.In all honesty, I do love my neuro - she broke the news of having MS to me in a very appropriate way, she is available at any time to listen to my troubles and she is very, very smart.  But she is also quite conservative in her apporach to medications, and that is fine by me - I _want_ my doctor to be conservative.  I'd hate for my neuro to jump on the bandwagon of every new treatment.  When Tsybari (or however it is spelled) came out, she asked me if I was interested, but was happy that I wasn't, she felt the drug dangerous.  Now that this new oral drug is out, she has asked me about that too but is happy for me to refuse it.  Like me, she says that it hasn't been around very long and we don't know the long term effects as yet.  Having a conservative doctor, in my opinion, is in many ways a good thing.Of course, there is then the problem that I want to try this treatment (I am in my fourth week of the first antibiotic).  I have solved it by just not telling her.  I will also skip my six monthly appointment if I am doing well and only go back when I want another MRI.  My GP is aware of what I am doing.Something I think a lot of very ill people lose sight of, is that your doctor works for you.  You pay him/her, if you don't like them, or you feel uncomfortable with them, change!  Youa re the boss, your medical treatment is your decision.  Your doctor _advises_ you.  With their knowledge and training, most of the time what they advise is the right thing to do - but in the long run, your treatment is your own responsibilty,  You are in control.That can be a very empowering thought.

MS Dx 2006. Began CAP 11Aug12. Tested +ve CPn, Oct2012.  Daily meds: mino 200mg.  Monthly Tinidazole pulses 1000mg daily for 4 days.

By "this new oral drug", do you mean Gilenya (fingolimod)?  On that one, toxicity reports are coming in looking pretty ugly:http://www.pharmalot.com/2012/04/fda-should-restrict-novartis-ms-pill-s… McPherson Brown, who for decades treated arthritis with tetracyclines, put it well.  Referring to drug companies' long list of failed attempts to make arthritis drugs that did any long-term good, he wrote that "There's a lot of room for serendipity in drug discovery, but nobody ever found the North Pole by heading south."  It's been another couple of decades since he wrote that, but they're still trying to treat arthritis (and for that matter MS) by suppressing the immune system, and still failing.

Occasional side effect: DEATH!  Yes, that looks pretty ugly http://multiple-sclerosis-research.blogspot.co.uk/2011/12/fingolimod-death.html ........................SarahA Journey through Light and Shadow  

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I cut some slack for a single cardiac-related death: it could just be a freak occurrence.  Some people have heart abnormalities that can lead to sudden death from fibrillation, and sometimes it doesn't take much to trigger it.  The ones that amazed me were the "two deaths from opportunistic herpes infections".  I hadn't thought herpes could kill people, but I guess if you suppress the immune system enough it can.  Those deaths were at a higher dose, which was never approved or even submitted for approval, but still...

D W

Norman,I'm no immunologist: nor would I pretend to be. It's a difficult subject.However, it seems clear to me (as a microbiologist) that, if you have a chronic active infection, the last thing you need is a drug which incapacitates the immune system.If I'd make an analogy, it would be that, by damaging the immune system, one is throttling the yard-dogs. Their bark is stopped. So you have a quiet night or two. Meanwhile the thieves are silently helping themselves to the silver.  

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Yes, that was meant to be the implications of the remark on trying to find the North Pole by heading south: they're trying to go in a direction 180 degrees away from the right one.  Perhaps the remark was clearer in its original context.It still is conceivable that they would find something that would do some good.  Interferons, for instance, are normally described as things that boost the immune system.  Neurologists don't describe beta interferon that way, but that seems to be only because they believe MS is autoimmune -- if this helps in MS, it must, in their minds, be immune-suppressive, so that's how they describe it.The other way an immune-suppressive drug might do some good is if it targeted a part of the immune system that was completely ineffective at killing the pathogen that caused the disease and instead was just causing needless distress to sufferers from the disease.  I'm no expert on the immune system either, but even from a distance it is clear that there are a lot of different components to it, different ones of which are good against different microbes.  Suppress a component whose actions would be ineffective anyway, and though you haven't really solved anything you have made the patient feel better for the moment.  There is even the possibility that by suppressing one component you'd upregulate another component which would be more effective.  But that would be accidentally going in a direction more than 90 degrees from the desired direction, which is unlikely.  A 90 degree departure is more likely, corresponding to a drug that had no effect on the long-term course of the disease, but just made people feel better for the moment.  My guess is that this is probably about what we are seeing with the current crop of new drugs, and that because the really bad drugs -- the ones that suppressed the parts of the immune system that keep Cpn in check -- failed during clinical trials.  (Most attempts at a drug fail in the clinical trials and never make it to market.)  Still, about both Tysabri and Gilenya, I've seen remarks that when one goes off them one gets a sudden burst of disease, as if the underlying infection had just been moving along at about the normal rate, but just was revealed again when the drug was withdrawn.

I spent 6 months on Gilenya. Had no side efects or benefits I could see. My MS clinic had hoped (& seemed to expect) an improvement in mobility etc as some of their patients had shown this. They tested everything carefully & monitored the initial day of taking the drug. It was all fine but your heart rate does drop in the first 2 hrs.Then I got a cold. After many weeks I stopped taking the Gilenya as logic dictated - by the drug suppressing my immune system I couldn't actually process what was happening in my body. It's been a bit over a month now & my body is still acting like it has a cold - in fact I seem to be exhibiting a lot of the indications of having Chlamydia pneumoniae. Haven't started the antibiotics yet - getting the supplements up to speed at the moment.I trialled another oral drug last year- Teriflunomide. In 6 mths I went from walking without a cane to lying on the floor unable to get up & blood sugar levels thru the roof. I was monitored fortnightly and told the staff & neuro that I wasn't feeling right but no one said anything until I said I wasn't coming back.I asked for blood test results & was told I couldn't have them because they "belonged to the drug company". I don't know whether I was on the drug or placebo. There's just something wrong about these drugs-they don't work for me.DMDS are a bit like if you throw a blanket over something & you can't see it anymore that it is no longer there. But we all know there's something lurking under the blanket. I've always felt better when not on any DMDS. But I wonder about the "flu"side effects I experienced when on interferon - was it a side effect of the drug or actually the underlying cause rearing its head?

Looking it up, I find that teriflunomide failed its clinical trial against beta interferon.As for the side effects of interferon, generally "flu-like symptoms" mean that you're having your immune system activated (from whatever cause).As for your cold, even if the initial infection was viral, Cpn does like to come in as a secondary infection.In any case, in guessing that the drugs that do get through approval probably don't inhibit the part of the immune system that stops Cpn, I'm being an optimist and guessing that the drug companies didn't have their thumbs on the scale during the clinical trials.  I don't think they usually do, but it does happen.  For instance, to pick a random article from the site I linked to earlier:http://www.pharmalot.com/2012/06/pfizer-cherry-picked-celebrex-study-da… the MS drug manufacturers pulled any stunts like that, things could be worse.When I was first looking into MS drugs, the ones available (Copaxone and beta interferon) gave, according to the studies, about a 30% reduction in relapse rate.  My accounting was something like: subtract 10% from that for all the subtle things that drug companies do to make the results look better (without breaking any rules -- if they break rules, it's worse), and subtract another 10% for the placebo effect (the trials were nominally placebo controlled, but participants could tell whether they were getting the active drug), and there really is very little left of that 30%.

D W