Saturday, 15 September 2012

Unrelated BLOGGER Comments September

Sometimes you what to say something that is unrelated to the threads. This is a spot for You. Previous comments can be got at on the posts on the right of the main page. 

46 comments:

  1. I'd be interested to know the following from Team G:

    Can you say that in the case of having two autoimmune conditions (MS+other) is there a 'synchronity' of relapses? I take drugs for both and my more 'visible' other auto-disease was getting better - now I got a new symptom. Could it be that my MS is also doing worse even if I don't realise any grave worsening (yet)?

    If I am right, that would be great because I could at least reliably measure my MS-progression by monitring my other auto-disease.

    Thanx.

    ReplyDelete
    Replies
    1. I don't know the answer, but I suspect they are not synchronised. I am not aware of any data on co-morbid autoimmunity being linked.

      Delete
    2. Thank you very much Prof. G.

      I find it hard to believe they are not linked since both are driven by common genes/immune responses, right?

      Anyway, if you come across interesting papers about co-morbidity would you alert us on this blog? I think it's a situation some of the others MSers also have.

      Delete
  2. Here's the $64,000 question that's often implied in many posts but never asked outright. It may bring too many COI into play but I'll ask anyway.

    MouseDoc and Prof G - imagine you are given the unfortunate, and ironic, news you have MS after a moderate (not too severe but not negligible either) attack of optic neuritis and some parasthesia. Due to your wide circle of contacts (just go with the hypothetical scenario!), no drug is off limits... Alemtuzumab, BG12, Rituxumab/Ocrelizumab, Cladribine, terifluomide, Fingolimod, Tsyrabi etc etc. What would you do? Not what would you advise others (which depends on their risk profile etc) but what would you, yourself do? I think that would be interesting info to a lot of people facing such decisions.

    ReplyDelete
  3. As I am not a person prescribing to other people, I will actually answer this but not sure that Prof G should answer this, even if you asked if his kids had MS what would you do?

    What would I do?

    I would rush out and do Venoplasty........"Only kidding"

    You just have to read some of my papers to see what I think is the most effective route to halting immunity and what I would want to do. This is reprogramming the immune response using a combination treatment approach that is not on offer to MSers at present. So I would either have to break all sorts of regulations and become a guinea pig, or I would look around and see what is on offer at the moment.

    I have my favoured combinations of whats available or on the near horizons, but at present you are talking hypothecticals as a number of the compounds above are not approaved by the EMA/FDA or NICE. Some other drugs are not approved for MS. In the UK there are guidelines when these agents can be prescribed, therefore in your scenario I may be offered an interferon or glaterimenr acetate however I personally believe in early and aggressive treatment.

    CoI: This is a personal opinion and each persons circumstance will influnece their choice. What is right for one person may not be appropriate
    to others. Why did I not mention specific drugs...because it is not my place to advise you of what I thing you should do. I want you to have choices and be informed so that you can make the correct choice for you and your circumstance

    ReplyDelete
  4. Thanks Mouse.

    "This is reprogramming the immune response using a combination treatment approach that is not on offer to MSers at present."

    Are you able to expand on that? I've read many of your papers but still not sure what you are suggesting above. I can understand why you've not mentioned specific drugs in the 'what's actually available' part of your answer but I'd (and I'm sure others) would be really interested in what your Guinea pig approach would be? Sometimes, understanding a person such as yourselves 'ideal' treatment helps in the selection from what's actually available in terms of the theory behind it.

    ReplyDelete
    Replies
    1. What for do you need to know which drugs combination if the drugs in question are not available/not authorized anyway?? You can't manufacture them anyway - or can you?

      Delete
    2. We have used a TRANSIENT depletion with antibodies (NB. Alemtuzumab is not transient)followed by the intravenous delivery of the causative antigen or antigens. This is the rub do you think it is myelin basic protein..I don't..but what would you choose? You need to make educated guesses and assumes an autoimmune component. My idea is you re-educate the pathogenic cells to be non-pathogenic whilst they are re-generating from the depletion step.

      The cillit Bang approach to MS, two treatments and disease is dead..well the relapsing bits

      We are investigating this approach in a trial at present.

      You can't manufacture them anyway - or can you?

      Actually I could manufacture all I would need, however I could not produce it to a standard required for human medicines or in bulk

      Delete
    3. When you say trial, I assume you mean mouse not man? Isn't this approach somewhat similar to Minoxatrone followed by GA - with the theory that the returning cells are exposed to the GA and then don't attack the similar myelin? When might we expect to see the outcome of the trials and, if successful, a phase 1 human trial (for which I'd be game!).

      Delete
    4. "When you say trial, I assume you mean mouse not man?"

      No Man or Woman

      "Isn't this approach somewhat similar to Minoxatrone followed by GA"

      Yes this sort of followed from our initial idea.

      Ramtahal J, Jacob A, Das K, Boggild M. Sequential maintenance treatment with glatiramer acetate after mitoxantrone is safe and can limit exposure to immunosuppression in very active, relapsing remitting multiple sclerosis. J Neurol. 2006;253:1160-4.

      When might we expect to see the outcome of the trials

      When the trial is completed. The study is recruiting.

      Delete
    5. This is the basis of the trial in the recruiting trial section

      Delete
  5. I saw this relating to London and cancer:

    http://www.guardian.co.uk/news/datablog/2012/aug/29/macmillan-london-hospitals-lowest-cancer-patient-satisfaction

    I wonder if London PCTs have a similar issue with MS patients?

    What do your readers think - are your experiences with MS in London worse than in other parts of the country or better? Myself - I think we get some pretty good neurologists here in London... but I've not been hospitalised (touch wood) so perhaps I don't see the darker side of the coin.

    ReplyDelete
    Replies
    1. Re: “What do your readers think - are your experiences with MS in London worse than in other parts of the country or better?”

      I read this blog every day, though never comment; at least I haven’t until now.

      Your question is too irresistible for me to... erm... resist I guess.

      So here goes:

      Early 2006 - Young handsome lad in a dream job living in the Big Smoke begins experiencing difficulties in his walking. Goes to his GP and the GP says lad must have pulled a muscle at the gym and needs to rest it off. Lad goes back a number of times but GP isn’t very convinced.

      Summer 2007 – Young handsome lad goes to GP saying he has to take his condition seriously as the situation with walking difficulties is getting worse. GP look befuddled, stroking his chin while asking young handsome lad why he didn’t come to him earlier (huh?). GP tells lad he ought to see a neurologist, but lad is a bit slow and says the issue is with his legs not his brain. GP says do as he says and stop being thick.

      Autumn 2007 – Young handsome lad goes to London’s Royal Free in Hampstead and an equally youngish doctor asks a series of questions but seems bemused. Enter a senior neurologist who grabs the lad’s leg and does something to it that causes it to tremor like mad. Senior neurologist seems to know something and says they have to scan the lad’s brain. Lad does all the scans and hospital says they’ll send through an appointment.

      Winter 2007 – Young handsome lad jets off to Dubai because he thinks he’s in love with a girl that lives there. Girl seems less interested than previously and the lad is concerned about his health. Turns out the Royal Free haven’t sent an appointment through. Lad rings the Royal Free and then the hospital bothers to do their job.

      Early 2008 – Young handsome lad comes back to London and goes to the neurologist. Turns out they’ve lost his brain scan results but suspect that lad has MS. Lad worries all night. After much delay, hospital confirms lesions on brain and book lad in for a lumber puncture. Lumber puncture goes disastrously wrong. Lad feels nauseous and dizzy, not to mention develops a headache on par with that of a haemorrhage. While on the underground, lad pukes all over the carriage, including some lady’s handbag. The callous people of London look at him like he’s a junkie. No one asks if he’s okay. Lad’s sister calls the hospital and they say to sister tell the lad to take time off work and sip on coffee and cola. Lad thinks he’s dying and wants his mum and dad but they live too far away.

      Summer 2008 - Hospital confirms diagnosis of MS but aren’t much help otherwise. Senior neurologist tells young handsome lad to hope for the best but plan for the worse (huh?)

      Early 2009 – Young handsome lad don’t feel so handsome and young any more. Leaves London and moves closer to mum and dad.

      Moral of the story: London is no place for a handsome MSer. Best of luck to you.

      Delete
    2. I'm not young, handsome or a lad but a mid 40's company director and mum with two teenagers. Doesn't everyone have an unpleasant lumbar puncture experience ? Here's a quirky thought - my son is a Scout and they get badges for all sorts of things. Maybe we should have a MS badge system too - Lumbar puncture badge, optic neuritis badge, etc

      Anyway back to the proper reply - My personal experience has been excellent with a London-based MS team (not Prof G's). I live outside the capital but my fantastic GP managed to get me in to see a neurologist who is an MS specialist - after several false starts with generalist neurologists or those whose special interests lie elsewhere.

      I got onto a DMT quickly and have access to first-rate information and support from the team. I am very thankful to live in the right place and have a great GP who accessed the right neurologist.

      Delete
  6. Is this for real? Young? hansome? Lad? Heh?
    Anyway, your story is the story of almost every other MSer. Best not to blame but to accept.

    ReplyDelete
    Replies
    1. As you know members of Team G volunteer to got to MS life congresses.

      It is very clear that there is a postcode lottery depending on the care you get and the treatment recieved. There are some not so good neurologists in differnt parts of the country.

      However, it cannot be denied that London has the highest concentration of MS-specialist neurologists.

      Delete
    2. The WHO reported in 2008 about number of MS neurologists per 100,000 population. The UK was on a similar level with Chile, Russia, Ukraine and Turkey. Germany and Italy, on the other hand, had over 1 MS neurologist per 100,000 population. Only China, Mexico, India and African states were worse.

      The issue isn't just about quality. It's about numbers, about access and about how good your GPs are at referring.

      I was categorically told by my GP that I didn't have MS - in front of a trainee doctor - and he was wrong. He told me this without doing a lumbar puncture, MRI or even a neurological test.

      So, yes, we have great people like you guys at Barts and The London. But so much more needs to be done.

      Delete
  7. rmforall wrote

    "why the classification of my posts as spam?" PLEASE READ BELOW

    "Do moderators agree that rmforall as spam?" YES

    "I'd be interested in feedback from anyone about my attempts to politely and briefly, a few times weekly at most, indicate specific relevance of many new MS studies and questions to the".. THE PARADIGMN YOU ENDLESSLY PLUG.

    ANY BLOGGER PLEASE FEEL FREE TO HAVE THEIR TWO-PENNITH WORTH HERE 'ROOM FOR ALL' IS ASKING FOR FEEDBACK!

    BUT HERE IS SOME FEEDBACK

    (A) A COUPLE OF WEEKS AGO WE WERE ASKED BY A BLOGGER WHETHER IT IS POSSIBLE TO GET RID OF YOUR POSTS AS THEY TOO ARE FED-UP WITH YOUR ENDLESS WITTERING.

    (B) WE GAVE YOUR INITIAL VIEWS AIRED BUT THEN IT BECAME A CONSTANT BARAGE, ENDLESSLY PEDDELLING THE SAME COMMENTS. YES WE GET IT..NO WE ARE NO LONGER INTERESTED IN HEARING THIS. THIS IDEA HAS ESSENTIALLY BEEN DISCREDITED.

    (C) THE IDEA HAS BEEN DISCREDITED MY BLOGGERS ON THIS BLOG

    (D) THE IDEA HAS BEEN DISCREDITED

    (E) YOU REPEATEDLY POST ON THIS BLOG AND IT IS ALWAYS THE SAME STORY LARGELY THE SAME QUOTES. IT IS TIRING AND I DO NOT WANT TO SUBJECT THE READERS TO THIS ENDLESS LOBBYING

    (F) YOU NOT ONLY WRITE ON THE BLOG BUT YOU SEND ENDLESS COMMENTS TO MEMBERS OF TEAM G'S PERSONAL EMAILS...THIS IS BAD FORM AND NOT ON.

    I HAVE ASKED YOU ON A NUMBER OF OCCASIONS ON THIS BLOG TO DESIST FROM POSTING ABOUT ASPARTATE, METHANOL AND FORMALDEHDYE IN RELATION TO POST AFTER POST, WHILST SAYING THAT WE ARE HAPPY TO HEAR OTHER PERSONAL COMMENTS THAT ARE NOT PLUGGING THIS PARADIGMN AND BOOK.

    I HAVE WRITTEN PERSONALLY TO YOUR GMAIL TO ASK YOU TO STOP ON A NUMBER OF OCCASSIONS

    I HAVE WRITTEN TO THE AUTHOR OF THE BOOK THAT YOU PEDDLE OF THE BOOK, WHO SAYS HE HAS NO CONTROL OVER YOU AND INDICATED THAT HE WOULD ASK YOU TO STOP.

    **************************************************************************
    MOST IMPORTANTLY please read VERY, VERY, VERY, VERY carefully.

    THIS IS ADVERTISING AND WE ALWAYS DELETE ADVERTISING, WHEN WE SPOT IT!!!!

    I DO NOT CARE IF THERE IS A FREE VERSION ON LINE THIS IS A FOR PROFIT BOOK SOLD BY A FOR PROFIT BOOK SELLER.

    ****************************************************************************

    YOU ARE A SELF-CONFESSED CYBER LOBBYIST...IF WE HAD LOBBYING FROM A DRUG COMPANY WE WOULD SPAM IT ALSO.

    YOU MAY SAY VV HAS LOBBIED FOR HIS/HER PERSONAL VIEW-PERSONAL INTERPRETATION OF WORK, BUT THIS IS DIFFERENT BECAUSE HE/SHE IS NOT TRYING TO SELL A BOOK AND DOES NOT REPEATEDLY COPY AND PASTE BITS OF TEXT. I ALSO THINK THAT VV COULD UNDERSTAND AND RESPOND TO REQUESTS. HOPE IT IS NOT IS A PATHOLOGICAL PROBLEM

    YOUR POSTS ARE AND WILL BE CONSISTENTLY DELETED AND SENT TO SPAM

    AT LEAST YOU HAVE THE COURAGE TO PUT YOUR NAME TO THIS BUT I AM AFRAID EVEN ANON POSTS WITH THESE QUOTES WILL END UP IN THE BIN TOO.

    "It seems that there is enough experience and competence in this group to simply apply the usual standards of polite openminded collaborative discussion, based on reason and shared specific evidence".

    AS SOON AS YOU POSTED THERE WERE A NUMBER OF POSTS SAYING THAT THE IDEA WAS DISCREDITED AND NOT WORTH LISTENING TO. YOUR BEHAVIOURS HAVE RE-INFORCED THIS VIEW. WE DO NOT EXIST TO AIR YOUR VIEWS

    I will maintain absolute confidentiality about any communications, upon specific request -- Google will immediately give my contact details -- I also remove people from my private list upon request, tho sometimes I forget and add them again if they show up again with another enticing comment

    DELETE THIS BLOG FROM YOUR LIST SUCH THAT NOTHING SHOULD ENTICE YOU TO PLUG YOUR FAVORITE PARADIGMN ON THIS BLOG....IT WILL GET DELETED.

    ReplyDelete
  8. Is it fair to say that anyone seriously wishing to have a real statistically significantly increased chance of avoiding ultimate SPMS needs to look to DMTs other than IFN and GA?

    ReplyDelete
    Replies
    1. Boy, I'd like an answer to that too.

      Delete
  9. OK, MouseDoctor, so at least we have a dialogue going, and agree that we want others to give feedback -- I am grateful to you for answering at length -- here, I will follow your lead of not again bringing any mention, however indirect, of the "breakthrough paradigm", which may have been decisively refuted by reason and detailed public evidence in a few posts to our forum in March -- I am keenly interested in seeing what will evolve, if I rigorously make contributions totally outside and aside from any connection with the paradigm -- I hear you admitting that you may quickly assess whether I am rigorously omitting "aspartame, methanol, formaldehyde", in which case you will not delete my submissions, which I promise will be brief, civil, playful, helpful, and discuss a specific reference -- I feel content and cheerful about this proposal for my collaboration with others on our blog -- do you have any other wishes or suggestions? -- I am keenly open and listening... yes, also I will no longer post directly to the dozens of members of your team, without specific positive invitation... just let me know if I err inadvertently with any person...

    I appreciate the enormous and complex work you do in service for all MSers -- the blog is a bold, outstanding, seminal experiment in online collaboration in medical science.

    within mutual service, rmforall

    ReplyDelete
    Replies
    1. Feedback to rmforall
      - I never read your posts any more
      - I am not interested in anything you may say
      - Just omitting the words "aspartame, methanol, formaldehyde" is no use. I'm sure your posts will still be about them.

      Delete
    2. Besides my Posts I am sure the readers are not interested in "playful"
      and can assure you, you will not get positive invites.

      We are not a soap box for others to validate their ideas. If you want a soap box I suggest you go to Hyde Park, London.

      Don't understand please read
      http://en.wikipedia.org/wiki/Speakers'_Corner

      Delete
    3. I stopped to read rmforall ages ago! I am a veteran blogger and can spot trolls miles ahead. What they crave is mentioning their name and paying attention - don't provide that MouseDoc.

      I have also become wary of some posters who post 'dramatic' stuff, either good or bad so I always ask for more details because sadly, there are many immature or wicked people on the internet who like upset or scare others, especially if the other feel vulnerable. Rubbish attitude really, in the end they have a messed brain I think.

      Delete
  10. Prof G,

    As Mouse Doctors superior, can you ask him to put a halt on his dungeons and dragons posts i.e. the White Knight stuff If there are rials, we would like to know what they are, not be teased.

    I'd also check his lab for any kegs of real ale. Some of his posts look like he is in a different world.

    Thanks

    ReplyDelete
  11. I do not drink Real Ale!

    I have asked spammers to desist from posting! You have asked me to desist from laying the foundations of a story. So I will..

    Guess we or should I say YOU will now never know what this is all about. Sometimes you need to go with the flow

    ReplyDelete
    Replies
    1. P.S. Whilst waiting for my knuckles to be rapped by my superior, I would just like to say I have never played Dungeons and Dragons ever!

      It is not teasing but answering comments. As you can read I consider you to be grown up, so you do not need spoon feeding.

      If you read the Blog carefully you can invariably find the answers

      Delete
  12. Oh let MouseDoc alone, his pics are funny! Btw, his way of dealing with news is maybe wiser than the (premature) announcement of Charcot Project (even if I understand the urge to share good news). I personally prefer to wait and get solid results than celebrate too early only to be told that XYZ is not working.

    ReplyDelete
  13. What's an E medicine portal?

    ReplyDelete
  14. I am actually grateful for the three fairly dismissive feedback replies -- and reiterate my willing commitment to participating cautiously and happily, contributing positively to the collaborative communications, while earnestly and carefully avoiding any hints in any way whatsoever that refer in the slightest to the infamous paradigm -- in my own mind, I am sane, and not a troll or advertiser, nor have any of my posts in fact been spam -- I enjoy the playful images from MouseDoctor -- within mutual service, rmforall

    ReplyDelete
  15. There's a link on the MSS forum to the Australian Catalyst programme - about how a combined antibiotic treatment is thought to have helped some people with MS by ridding them of chlamydia pneumonia - I'd love to know your view on this, can any of the team comment? The Drs involved are David Wheldon here in GB and Dr Thibault in Australia. I realise you might shoot the idea down in flames but please comment if poss. Thanks

    ReplyDelete
  16. I have not seen the data but if we go back a few years Prof G looked to see if there was any thing in the idea of Chlamydia as a cause of MS and found the idea wanting.

    As this appears to be a TV programme pushing the idea, be warned this talk of a c*** is invariably c*** a different set of 4 letters for the c word, one ends in e the other in p. Talks of cure should first appear in the science media and not the TV

    ReplyDelete
  17. I actually think the Mouse Doctor looked quite fetching in his red Marilyn Monroe dress :). Although I am a little worried that he have inhaled a bit too much in the lab.

    ReplyDelete
  18. Gavin Giovannoni really cares -- brilliant, effective, clear slide show re innovating all aspects of MS care...

    http://www.slideshare.net/gavingiovannoni/an-holistic-approach-to-ms

    71 slides
    An holistic approach to MS
    by gavingiovannoni on Jul 14, 2012
    3,651 views
    Talk to the Department of Neurology, Norwich 11 July 2012

    ReplyDelete
  19. Mouse doctor re Chalamydia, this was not talk of a cure, simply that people had been helped - a bit like other therapies help but don't cure. I'd really appreciate it, as an avid supporter of this blog and your work, if you or one of your team would at least read the short piece on the MSS forum Everyday living board, or look at the Catalyst video and pass comment. No I'm not a crank or obsessive etc but would love it to find some kind of additional therapy thst might help - myself and many others.
    Thanks

    ReplyDelete
  20. I know minocycline, an antibiotic,has been suggested to be of help, particularly at the stage of CIS

    ReplyDelete
  21. "Is it possible that multiple sclerosis can be cured...According to these medical mavericks the answer is YES"....These appear to be the opening words of the Australia broadcasting Comporation video and seems to to be talk of a cure to me(http://www.abc.net.au/catalyst/stories/3572695.htm)

    MRI images before and after.....are miraculus..is this not natural history?
    Lesions come and go from scan to scan even if you are not on treatment.

    So the program brings up stomach Ulcers and bacteria, which proved right, then Zamboni and this proved? The programme goes on to talk about blocked veins being caused by clamidya and it becomes more and more pop science

    They talk about minocycline (irresponsible in my opinion) on the programem, which has been looked at in MS but this is not part of the Wheldon approach which looks at a different tetracyline antibiotic. This approach uses 3 antibiotics plus antioxidant and omega 3 and ...and ...over a year. Then you have to use Lactobacillus drinks also.

    If MS is triggered by infection there could be a link. This is also have an impact to your gut flora and again there are areas of interest in how this shapes the immune response.

    This area of research is hot to trot at the moment so it should be able to take advantage of this to do a studies. Surely even the producers of Actimel a producer of lactobaccillus drinks could chip in a few bob (English money) to get the trials off the group However being bacteria free has its consequences...you shouldn't need fillings either..but it is not all good. If you watched Horizon on BBC2 (available on iplayer for UK viewers or catch up) last night you would see the problem of antibiotic resistant bacteria

    My response to David Wheldon MB FRCPath is to get off your bum and do something about it rather than publisizing the idea on the web and TV. Whilst it is difficult to get funding for trials of drugs that are cheap and of patent free, it is not impossible. If it is so great then again it should be easy to do in a few people and PCR techniques can show a few copies of bacterial DNA so it should be easy to prove the infection aspect of the hypothesis.

    This has been around at least since 2006 Stratton CW, Wheldon DB. Multiple sclerosis: an infectious syndrome involving Chlamydophila pneumoniae. Trends Microbiol. 2006 Nov;14(11):474-9. Epub 2006 Sep 25. Review. and on the web since 2003. No publication since.......this is Armchair science

    There needs to be evidence base or you just spend all of your time and money on nutriceuticals that have no proven benefit. As we saw yesterday with Ginkgo these n of one observations often do not add up to much in controlled trials.

    I suspect because of the interest in gut flora that antibiotics may come to the table, I guess there needs to be a lobby to do this.

    ReplyDelete
  22. Minocycline has been reported to do good things in EAE also. It is reported to be immunosuppressive and inhibit microglia....But not a cure I think

    Be warned some of the sudies in EAE are a "building site effect"...i.e. it is stress that is the inhibitory factor. Minoclycline in its pure form is very very acidic and if the pH is not adjusted properly it is like giving hydrochloric/sulphuric acid...Can you imagine the stress of that. This occurred undoubtedly in a number of the animal studies.

    ReplyDelete
  23. If they're looking into gut flora, then maybe they ought to look at faecal transplant which has had a lot of coverage recently- (I'm sure I'm giving the opportunity for a lot of schoolboy humour with this one)

    ReplyDelete
  24. I took Campath for my MS 3 years ago (1st dose) and 2 years ago (2nd dose). All seems fairly okay at present. However, I'm concerned that things may be happening on a level that can't be seen on standard MRI...

    1. Are there more detailed MRI options (MTR, atrophy etc) available privately outside trials?

    2. I'm concerned to try and combine some neuroprotection with the immunomodulation I've already undertaken. I realise (a) we don't know if any drug is neuroprotective and (b) trials on combinations haven't been, and might not be, done. However, I'm thinking of (privately as I know the NHS will be unlikely to assist me in this) taking BG12 once it is approved in the hope it provides some neuroprotective benenfits and further reduces my risk of one day developing SPMS.

    Do you have any views on this? I realise there's a risk in this absent trials but it seems to make intuitive sense on what we know about mechanisms of these different drugs. It doesn't appear strongly (if at all?) immunosuppresive and so I'm hopefully not needing to worry about PML etc.

    ReplyDelete
    Replies
    1. These are the ideas we are having as well. However, we need data and licensed therapies before recommending anything. Clearly an anti-inflammatory followed by a neuroprotective drug is the way to go.

      Re: MTR; this is not ready for prime time in individual MSers. What would you do if your MTR was changing? I only do test or investigations that affect clinical decisions.

      Delete
    2. Whilst, in an ideal world, I agree, the problem with data and licensed therapies for this kind of approach, is that they will only rarely be run in trials as the unlikelihood of NICE agreeing to fund such a belt and braces approach means pharma, in turn, are unlikely to invest significantly in proving their enhanced effectiveness in combination. Those of us with MS now have to make decisions - and take risks where necessary - on the currently available evidence and not what might or might not come to light in the future. Where this blog is (or can be) especially helpful is in helping us make as educated a 'risk' as possible. i.e. based on what we know today, would an approach as suggested above, have a logic to it?

      More specifically, am I right to believe that BG12 is not (or not significantly) thought to be immunosuppressive. That's my main concern about taking it - I'm willing to risk it simply not adding much to the Campath I've already taken in terms of outcome - but would be more cautious if it was likely to deplete my immune system further and risk PML or other? Although, with Campath, the immune system reconsitutes itself by around now I believe (hopefully in a more 'friendly' way) so maybe this isn't such an issue in any event and I can afford to risk a bit of further immunosuppression?

      Difficult decisions!

      Delete
  25. Thanks MD for examining and commenting on the chlamydia question, really appreciated. Because of the nature of your work and background, you are able to understand far more quickly and easily than someone like myself. I don't have your scientific background, and I work full time and run a busy household - but I also happen to have MS - therefore have limited time to read this blog and other resources. Once again, thank you.

    ReplyDelete
  26. I don't usually visit the US thisisms website as it seems to have been taken over by CCSVI, but someone has put a summary up of all the drugs in the pipeline, who makes them and what stage they're at- 53 in phase 2 trials. Things do seem to be moving in the MS research area

    ReplyDelete
  27. Hi there,

    what do you think of fungi or fungal toxins and MS?
    Could there be a causative link?

    http://www.ncbi.nlm.nih.gov/pubmed/20214953

    I haven't found much about fungi and MS. Fungi could also explain endemic and demographic factors, can't they?

    Thanks!

    ReplyDelete
  28. It is all hypothetical and as ever they authors of the article should get off their backside and do something to prove,disprove their idea otherwise it boils down to mushroom food without any real meat on the story.

    Armchair science is the most frustrating stuff.

    Maybe I could link the distribution of MS to some bird species, maybe a sparrow or robin to MS. Sometimes it is easy to get not very good or wacky ideas published and it takes ages to disprove and find the chink in the idea. You don't get real robins in USA but you have MS, which springs to mind for my idea. If we think aetiological trigger then it is likely to be virus bacteria fungus or protozoa (not likely)

    Is there links with inhaled fungi, I'm not convinced but don't know enough about it.

    There are some papers in support of candida
    http://www.ncbi.nlm.nih.gov/pubmed/20556470

    However what to I think of fungi and fungi toxins, well they are great!
    This is where cyclosporin A that revolutionised transplant rejection and gilenya for MS originated from..yep fungi

    ReplyDelete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.