Discussion in 'Phoenix Rising Articles' started by Mark, Jun 3, 2013.
I thought that they will have cd's ready for purchase.
Other than for research, I'm not sure that there's much value in having a specialist centre with immunologists, neurologists, dieticians, psychiatrists etc. Also, I don't think it's realistic to expect the NHS t pay for lots of centres with this range of experts, given how little value they are able to provide. If there were infinite resources for the NHS, and a good system of accountability to ensure that problems with how patients are treated will be identified and lead to disciplinary action, then that sort of set-up could be a good idea. In the current reality that we face with CFS in the NHS, I don't think it would be a good idea.
Gerada has actually been critical of proposals for a statutory Duty of Candour, and excitedly linked (all in CAPS) to a poor blog post which claimed to show that there were no excess death at Mid Staffordshire hospital. I do not think that we should be pushing for more 'care' from this organisation, given how poor the evidence is that there are effective treatments available for 'CFS'. Testing for alternative diagnoses could be handled by GPs, or specialist centres limited to this role.
If people want lifestyle/emotional/diet advice and help, I think it would be better if they were provided with money that would allow them to get this for themselves. Or pay for a friend/relative to help them out. Or just let them access research papers for themselves. The NHS does some things very well, and some things very poorly. CFS 'management' does not play to it's strengths, and this has led to quackery being inflicted upon patients. Until there is some accountability for this, I'd much rather starve the beast than pour more money in and hope it will work out better next time.
Even with these teams there's the risk that you end up with 4 or 5 different therapists working together to administer stealth-CBT/GET. It's the approach I experienced in Lelystad, and it sounds like some of the less hard-core BPS clinics in the UK do the same.
But even when the multidisciplinary team concept is abused in this manner, it's still probably a better result than what comes from the pure psych teams. They at least pretend to treat ME seriously, which does help with the public perception, and with a wider variety of backgrounds and knowledge there's a better chance of biological issues being taken seriously and addressed somewhat.
How about multidisciplinary teams AND a law firing all doctors and other therapists who substantially mislead patients regarding their beliefs and approaches to treating an illness?
There is still the issue of plausible deniability. She now has less credibility when trying to argue that she didn't know about the clear immune abnormalities. She may argue that she doesn't believe the research, or interpret it as somehow psychologically based, but she can't argue she hasn't heard hard evidence. That's a start.
Any ideas how this would related to ANA (anti-nuclear antibody) titres? ANA tests are the go-to test for GPs (in the US anyway) to determine the existence of autoimmune disorders. I tried reading up on ANA and the tests, but my brain exploded.
I would guess that many low-avidity antibodies would show up in an ANA test as a high ANA titre. However, since most of us do not have high ANA titres, I'm guessing that's not true. Are ANA tests specific to certain autoantibodies, or are they supposed to pick up any autoantibodies? This immune stuff is going way, way over my head, I'm afraid.
Fine, fine article Mark, clearly a labour of love and thanks for bringing back new from the frontline to all of us unable to make it.
Re embargo, on the Invest in ME website is the latest issue (Vol 7, no. 1) of their Journal with abstracts from the IiME 2013 Conference, including details of the new Rituximab maintenance study. Interestingly, some of this info was tweeted by Jorgen Jelstad, the Norwegian journalist who knows Fluge & Mella well, so I'm assuming he knew this was ok to tweet.
I'm not going to quote from the IiME journal here, in case it is sensitve (there is more than was tweeted), but here's the tweet:
I would need to know the details of the tests to be sure. My guess though is that instead of picking up one anti-ANA antibody, they will pick up many and think its only one, because thats the presumption I think. The thing about this model of autoimmunity is what antibodies we have will be random ... possibly explaining why we have the appearence of so many subgroups. However the Rituximab research (so far, I have not looked at what was said in this conference, I need the DVD or the publication) indicates that upwards of 70% might have this problem. We still don't know what is wrong with the other nearly 30%.
Action for ME mention the conference very briefly, and provide a link to Mark's conference summary:
I didn't report a couple of the things Dr Weir mentioned because we were asked not to. All will be revealed when the DVD is published, which is normally after the embargoed material is published, which is why the DVD comes out a few months after the conference. There's a genuine risk that research may have a more difficult time finding a good publisher if everybody already knows what it says.
Staines mentioned gamma/delta T, I think he said they straddle the adaptive and innate immune systems, and I think he said they have found an 'observation' there but not statistically significant.
All I know on this is that Bansal noted that all the standard immune tests come back negative; I got down some of the ones he mentioned and I have one as 'ANCA' but maybe that should have been ANA. Anyway, from what he said I would assume that they come back negative (that's why he described this kind of autoimmunity as 'subtle'), but I don't know if there might be potential for more specific autoantibody tests once you know what you're looking for. Assuming that's feasible, I would think that sounds like a good candidate for a future definitive blood test for ME, assuming also that this autoimmune theory is correct of course.
Thanks Simon, and thanks for all your help with it.
I'm checking on the situation with the embargo, but I'm sure it's fine, I'll let you all know here when I have confirmation this is OK.
Actually, I get the impression that they think that (many or all of) the non-responders do also have this b-cell problem but maybe worse or more ingrained than the ones that respond. From Bansal's comment about the importance of early diagnosis, I think that may be a factor. Also the details of co-infections or triggers may define subgroups in terms of the response patterns, particularly re: who responds and who doesn't; hence the idea now of treating with appropriate type of antivirals as well at the same time - that issue may be significant for those who respond but then relapse. There's clearly a lot more science to be done to work all that out.
I believe that came from the Spanish HIV doctors that we recently published an ariticle about - Mikovits went over and showed them some stuff and got them involved. They took an initial look and found irregular B-cells, but in their recent paper they mentioned that their initial observation didnt show itself in their larger study, though they pointed out some reasons why that may be the case, and clearly havent shut the book on there being B-cell abnormalities.
It could very well be ANCA - it is an autoantibody and at least one specialist tests for it routinely.
Invest in ME website, Conference Report by Dr Ros Vallings:
http://www.investinme.org/IiME Conference 2013/IIMEC8 Conference Report.htm
The thing about antibody producing B cells is that they can replicate. A long term patient may have many more problem causing B cells, a higher percentage. This is all still hypothetical though, my mantra as always is we need more research.
Hi Mark, another great article for our front page.
I love this quote. I'm going to send this to a rheumatologist who wrote in his report that "chronic fatigue" is a psychological condition. When the FDA finally approves a treatment, will doctors like this be open to malpractice lawsuits?
Well, I've just read it, and goodness knows how you managed that amazing feat, Mark! The mind boggles!
It took me three days just to read it!
Thanks very much Mark. It's a really helpful and fascinating record of events.
There really is so much meaningful research being carried out at the moment. The research field has totally transformed over the past 10 years.
I got ill about 9 years ago, just before IiME started holding their conferences, and I think I've seen every conference (on DVD) that they've held.
In the early days of my illness, they were the best/only source of information for me with regards to ME, as I knew absolutely nothing about ME, and I hadn't discovered any internet forums.
The conferences have always been excellent, but there really didn't seem to be a great deal of research being carried out when the early conferences were held.
Now the conference is packed with dynamic scientists carrying out enormous cutting-edge research trials, looking deep into the complex workings of the body at a cellular level, using technology that's never been available before.
Things have transformed, and it seems to be accelerating.
A few years ago, who'd have thought that a scientist with the status of Lipkin would be looking at Dr Peterson's patients' spinal fluid and hinting that they "think they may have found a 'potential novel candidate' in the spinal fluid..."
Absolutely amazing article Mark! I have to take a break before I can read the rest and make sense of all of it. I'm so appreciative of your efforts and of course all the researchers and doctors who took part.
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