The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Former Initiatives

Discussion in 'General ME/CFS Discussion' started by Hayes, Sep 25, 2015.

  1. Hayes

    Hayes

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    I’ve got a question for the more experienced PWME. The initiatives that have popped up the last couple of years (rituximab, Lipkin, Davis and others) make me quite optimistic about the future. Hope that in the next 5 years big leaps forward in terms of knowledge about the pathology or maybe even in treatment are possible.

    Is that hope justified or a mere naive look towards the future from someone who is desperate to get better? I got my diagnosis at the end of 2011. This was at the same time the whole XMRV episode ended so I don’t have much knowledge how that was perceived in the community at that time (2009-2010).

    Have there been other big initiatives in the past that created a flare of hope but ended up being a bust (like XMRV) or didn’t fulfill the expectations for some reason (Ampligen?)? Or are the ongoing biomedical research and those that (hopefully) will be conducted in the nearish future on a scale that hasn’t been seen before in ME?

    Greetings from an ignorant fellow patient!
     
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  2. halcyon

    halcyon Senior Member

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    I've wondered the same thing. I only became ill in the beginning of 2014. Looking back, it does seem like the velocity of research appears to be increasing. It also seems to me like the Stanford, OMF, and Lipkin efforts are relatively unprecedented.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    Wow, @Hayes great question and I became ill in Jan 2013 about a year before @halcyon and also do not know the answer!

    I had mono/EBV March & April 2012 but recovered for ten months and then got sick again Jan 2013 but did not recover so I put the 2nd infection as my start date.

    It does seem like there is a lot of good research going on and am curious how it compares to XMRV or Ampligen and things that didn't pan out. Also lots of research on MCAS and mold illness which play a huge role in my case besides the viruses.

    Great question!
     
  4. Bob

    Bob

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    Yes, it's an interesting question.

    I've been ill for 11 years, and I discovered online forums shortly before XMRV hit the news. I've been watching the IiME conference DVDs since the very first conference, and I think they have been an interesting barometer for the state of play in the field of ME.

    I constantly learn things about the history of ME, from people who have been ill for longer, so I certainly haven't got a complete grasp of the history, but I've definitely seen the ME research field transform over the past 2 to 4 years.

    The XMRV issue seemed to be a turning point, in terms of the amount of research being done. I think this is in part coincidence, but the XMRV research also brought quite a bit of interest to the field from outsiders. The Solve ME/CFS Initiative have commented on this as well, and observed that XMRV brought new researchers into the field. For example, Dr Lipkin became involved directly as a result of XMRV. But other researchers have become involved for other reasons (e.g. Ron Davis's son has ME), so I think that XMRV may have played a part role in the expansion of ME/CFS research but that its timing was probably part of the expansion of research that I've witnessed rather than the direct cause.

    When I first became ill there seemed to be an utter lack of meaningful research except for a few isolated clinicians such as Byron Hyde and Dan Peterson etc. doing their small scale investigations with their patients. These were the type of researchers who presented at the early Invest in ME conferences, and they didn't seem to be well-networked with each other or with a scientific/research network. Peterson's network has visibly grown year after year.

    When XMRV hit the news that was the only newsworthy research that I remember reaching my radar at the time, but now there is loads of research in the pipeline, and loads of newsworthy researchers involved in the field.

    XMRV was a false lead, and Rituximab could yet disappoint us, especially as it's not yet been replicated by any other research team. But the initial findings seem to be quite robust, and the model of illness seems to be widely accepted as having potential.

    Having well-resourced, high-status, and world-class researchers such as Lipkin and Davis on the case is definitely new to our field. And the number of researchers in the field seems to be steadily growing. As does the recognition of the illness e.g. from US government bodies such as FDA, HHS and CDC. (e.g. The FDA carried out the "voice of the patient" conference, HHS finally seems to be taking notice of us, and the CDC was beyond a joke 5 years ago but now at least seems to be instigating a serious research program even if not perfect.) I think almost every aspect of our field has been transforming over the last 2 or 3 years, albeit at a very slow pace. Perhaps the media and the medical authorities are the slowest at changing.

    So, I would say that things have transformed in the relatively short period that I've been ill, but especially in the past 2 to 4 years, and that things are looking ever more promising. I'm very excited about what's going on, but always disappointed by the pace of developments. Things always take longer than we hope. And I think that new research technology may bring us answers quicker than would have been possible in the past.

    People who have been ill for much longer than myself, saw the field change and get much worse years ago, when the field was hijacked by the psychologists. I think long term patients tend not to be optimistic, in terms of politics, because the situation was much better for them when they first became ill and the illness got treated seriously in clinical settings. They saw things change dramatically for the worse.

    The clinical picture is probably currently much worse than those days but, even so, I think that the level and quality of research may now be better than then, even if we are still fighting many battles. Also the research technology has changed exponentially over the past decades, so that's a reason for great hope in my opinion. For example, Dr Lipkin made a recent announcement that he's developed a cheap technology that can detect all known (and some unknown) viruses (that can infect vertebrates) in a blood or tissue sample. This is massively ground breaking stuff, but it's just a single example of the technology available today e.g. to Likin's and Davis's labs.

    Just my own thoughts and perspective. Others may have different perspectives.
     
    Last edited: Sep 26, 2015
  5. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Bob for explaining all that and it's very interesting to put it in context and perspective.
     
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  6. digital dog

    digital dog Senior Member

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    It's definitely changing. I still can't believe, however, how many people don't know what ME is. When I say I have ME most people think it is MS.
    There definitely needs to be more media coverage on this illness.
    I so wish that a good documentary like Voices from the Shadows could be viewed. That would get people talking.
    I know that the richest man in the UK has just been diagnosed with Lyme (and all his family too). I wonder if their paths will lead to CFS and he could invest a lot of money into research?
    We need more high profile people to get this and then the media will take note.
    Sad really.
     
  7. sarah darwins

    sarah darwins I told you I was ill

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    More media coverage, yes, but only good media coverage! So much of what does make the media is so confused, and confusing, that it's worse than nothing at all. I doubt one journalist in a thousand is aware of the distinction between chronic fatigue and me/cfs, or of the problems which have arisen from the blurring of that distinction.

    Re the rich guy with lyme (John Caudwell). I don't think he's anywhere near being Britain's richest person, though he is said to be the country's highest taxpayer (isn't that interesting — tells you plenty about all the people higher up the rich list). He is definitely putting his money where his mouth is and is inviting investment ideas for lyme research, but as far as I know he's focussing on that. I would have thought serious work into late stage lyme would inevitably have some overlap for me/cfs, and might help settle the debates about whether the two are entirely distinct, or one a subcategory of the other etc etc.

    Mr Caudwell has certainly kicked up a lot of media attention. Interestingly, his lyme campaigning doesn't seem to be attracting anything like the degree of skepticism that always comes with me/cfs awareness raising. On which subject, out of curiosity I have recently tried out saying "I've got lyme disease" on a few people. When I mention lyme, people say "Oh, that's awful, you poor thing", a reaction I've almost never had if I've told anyone I have cfs/me or just ME. Perception is all.
     
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  8. digital dog

    digital dog Senior Member

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    I'm so with you Sarah. I have recently started telling people I have hashimotos thyroiditis (hypothyroidism) and I have had a ridiculous amount of sympathy from NOTHING AT ALL!!!
    Seriously, so many people rang me to ask about how I was ( I think they must have been discussing it when together). I now tell people I have thyroid issues and that I am unable to tolerate the medication (which I can't). It is a nice change for people to believe I have something. I milk it to be honest as it is the first time in my life I have a label that people identify. Im no longer the person who THINKS they have something, I am the person with lab tests to prove why I feel so dreadful. I hope this doesn't upset people...Im just so tired fighting other people's ignorance after two decades of poor health.

    John Caudwell seems like a decent chap (the fact he pays his taxes is testament to this!) I wonder if he knows about LDN for lyme? Surely he must do. Hopefully all his research will lead to advances in ME. Im not saying that ME is lyme but perhaps there are similar immune system malfunctions going on.
     
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  9. alex3619

    alex3619 Senior Member

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    I have seen or read of these research boom-bust cycles over and over.

    In the 80s most were sure it was EBV. Oops. Yet that theory is not really dead either.

    XMRV was not the first retrovirus to grab attention in ME.

    The psychobabble started with a thesis and paper in 1970. It took the imagination of some psychs who eventually ran with their version of it. It remains unproven.

    There have been sooo many theories. Somebody comes up with some treatment, a few patients improve on it, then there is a boom. Several years later the vast majority of patients are no better and they move onto other things. Does anyone recall I had my own theory in the late 90s? It was wrong, but my theory mark 2 was not about cause but pathophysiology and has yet to be disproved.

    I think ME is one of the most complicated diseases there is, at least in how it presents itself right now. The autoantibody theory might simplify that a lot, but that remains unproven. So the key to all such things is the advance of research technology. In the 80s it was cheap computing and high temperature polymerase for the rapid replication of DNA in the lab. Every advance in technology gives us even more tools to work with, though also more potential failures, not just successes.

    We are not alone. Billions of dollars and a century later, type 2 diabetes still remains largely a mystery. We have mapped the pathophysiology to a fair extent, but most discussion of causes is dubious. At least these patients have therapeutic regimes that can be tried though.
     
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  10. ukxmrv

    ukxmrv Senior Member

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    I don't think that much has changed over the past 30-odd years I have had ME. What it boils down to in the end is money for research and researchers interesting in the disease getting published.

    There has been excitement over enteroviruses, EBV, HHV6, bacteria, stealth viruses and retroviruses stretching back over decades.

    The biggest development for me in the last decade has been the ability to buy drugs on the internet. This gives me the chance to try new things that I could only read about before.

    We have always have exciting research discoveries that never get replicated or fully investigated because the money simply is not there. Research findings are not being translated into treatments that the average doctor or a local specialist in the field will prescribe.The current findings are not even being translated into anything that the average doctor will even read about.

    We have the researchers interested but how long will they be able to work without the money. When there is significant funding in the right direction the big breakthroughs will occur and then filter down to patients.
     
    Last edited: Sep 27, 2015
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  11. alex3619

    alex3619 Senior Member

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    The internet also gave us places like Phoenix Rising. Online communities bridge the isolation gap. While not a cure, it makes our problems more tolerable.
     
  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    For a really thorough history of ME research and politics see Mary Dimmock's excellent paper The burial of ME in my signature.
     
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