May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
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New to cfs and research

Discussion in 'General ME/CFS Discussion' started by nikefourstar, Jan 17, 2017.

  1. nikefourstar

    nikefourstar

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    Would anyone who has had this for a long time say that they are actually close to figuring this out or does this hype happen every year to end up not finding anything?
     
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  2. Murph

    Murph :)

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    Good question!

    To figure out the true chances of something, one way to avoid your biases is to take an inside view and an outside view. The inside view is very exciting:
    • The amount of new research recently is high by ME/CFS standards, (global collaboration: Melbourne, Haukeland, Stanford).
    • Discoveries are coming out that fit together (energy production problems!)
    • Understanding of biology is always improving in ways that help narrow things down (oncology research is uncovering a lot about hypometabolism, immunology knows ever more about auto-immune conditions)
    • Technology is improving in ways that help us see more clearly (metabolomics processes getting cheaper and better)
    The outside view is rather a contrast. Many diseases are far more progressed in terms of understanding and documentation and have been researched for years:
    • MS is mostly about demyelination and lesions
    • Alzheimers is mostly about brain plaques
    • Cancer is mostly about tumour growth
    And yet they still have mostly fairly primitive treatments that work for only some patients, some of the time (exceptions here for certain types of cancers).

    Diseases that have been more or less effectively researched and if not cured then very well treated had a LOT spent on them and singular etiologies: e.g. HIV/AIDS, diabetes.

    Where to end up after this? It's not clear. ME/CFS is obviously an outlier and an odd-bod in many ways. Perhaps the outside view is less relevant? Giving up hope is not fun, either. It may be an act of bad faith, but I choose to remain hopeful!
     
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  3. ash0787

    ash0787 Senior Member

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    I haven't been on phoenix for that long and only been following the entire thing for 6 to 9 monthes or so,
    I did notice a change in the research atmosphere etc ( not sure how to put this at the moment, kind of tired )

    these videos I think are the most recently up to date in terms of what the researchers are doing for this particular disease https://www.facebook.com/OpenMedicineFoundation/videos/956825444421877/ 36 minutes on in that video, then all of this video https://www.facebook.com/OpenMedicineFoundation/videos/956878351083253/

    it might be hard to understand exactly what they are talking about if you haven't read a lot beforehand though depending on your educational background.
     
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  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    There is always hyped researchers, and hopeful patients, in serious diseases.

    Time will tell what the latest findings mean,

    But at least there is at last some consistent results from independent groups. It could help narrowing down potential treatments. Honestly I imagine somewhat randomly stumbling upon good treatment will come before any mapping of the disease process. Just look to MS, Lupus, Alzheimers etc., all heavily researched diseases, as pointed out above. They`re still miles away, because our bodies are incredibly complex. And we probably think we understand more than we do.
     
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  5. Mary

    Mary Senior Member

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    I have no idea if they're close to figuring out ME/CFS; however, there is so much more new research being done now, which is not hype (see posts above); the NIH is finally waking up too, coming out of its coma of denial, like a long-slumbering giant - it's moving very slowly, but at least it's finally moving after 35 years of inaction. So I think the odds are greater than they have ever been that answers will be found - but as others point out, it still may be a very long haul; but I agree with @Murph, I choose to remain hopeful - it helps keep me sane! And what else can you do? I want my health back more than anything so I keep experimenting on myself, like many others here. And once in a great while I actually make a little progress; if I stopped trying, I wouldn't make any.
     
  6. nikefourstar

    nikefourstar

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    Can I asked what set your illness off and what your symptoms are?
     
  7. RogerBlack

    RogerBlack Senior Member

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    To sum up what I've read - not very soon.
    At the moment much of the research is like looking at a poorly performing car, and seeing soot coming from the exhaust.
    We've worked out it's not a diesel, but have little idea other than speculation as to what's actually causing the soot.

    On CFS.
    There are several complications to developing an effective therapy.
    Most obvious is funding, but neglecting that for the moment.

    There is research showing that there are at least several different types of CFS - though they seem to have in some way similar groups of symptoms, they may not all have exactly the same cause.

    Depending on what you're targeting the drug to, there may need to be several treatments developed.

    You might end up with one only treating CFS in those with severe muscle pain and relatively little PEM, and doing nothing for the rest. (for example)

    Another possibility is what's found first might not be a 'cure', but a treatment for one or more symptoms.
    MS might be a reasonable model - it's taken 20 years to go from the first candidate drugs to more modern ones that seem to have a reasonable hope of helping more than half of patients.

    There are many increasingly powerful discovery techniques to analyse what ME/CFS actually does to the body, but at the very best, it's going to be a couple of years before we have a mechanism, and many years to work out a reasonable drug for it.
    The many years might be shortcut if it is found that a combination of existing medicines could help.

    Rituximab for example looks promising - but the trials most definitely haven't found that it helps everyone.

    On timescales.
    http://www.fdareview.org/03_drug_development.php
    If you sum up all of the delays, you get to at the very least 7 years being very optimistic from the time you have looked at what causes CFS, and designed a drug between that design and market approval.

    We are not at the point we can work out a sane target for a drug yet, and to get sure enough on a mechanism you are willing to invest many, many millions on clinical trials on a drug is going to take a while.

    I have a hard time seeing it as less than a decade out.

    Uncovering a mechanism for how CFS works may let something rather faster happen - with luck.
    There are many thousands of drugs which have been approved, and any of these drugs can be used by a doctor off label to treat a disease immediately.

    There are many more drugs that have gone through some or all clinical trials, and been found ineffective for the disease they were aimed at. If it looks reasonable that one of these might help with whatever is found to cause CFS, this could cut several years off drug approval.
     
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  8. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I also remain hopeful since the research so far is positive and points in a certain direction but ...and it's a big but, the research is still extremely meagre. A handful of researchers. This means progress will be extremely slow, even if we do find an answer, the treatment still has to be cost effective and validated by clinical trials before doctors can start treating patients....at the moment we are at the " I wonder if" stage of research. This on its own can take 5-10 years the clinical trials the same. We have a long way to go. A lot of people here are excited since there hasn't been this level of breakthrough research before from what I can see. There is a massive amount of speculation and wild theories flying around from members here which is good, but that doesn't make all the theories anything more than that .....an idea that is yet to be tested. I would prepare yourself to not rely on a traditional medical treatment for 10-15 years. If it's quicker than that ...great. There are many things you can do right now to improve things if you have CFS (pacing, heart rate monitors, diet, sleep hygiene, supplements), but you may need to go through diagnosis and acceptance of the condition first. Please pursue your diagnosis with your doctor, you can then start working out what you need to do about it.
     
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  9. ash0787

    ash0787 Senior Member

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  10. Dechi

    Dechi Senior Member

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    Fluge and al are trying 2 meds in different centres right now, double blind trial. One of the two meds is Rituximab. They will end the trial on october 27th 2017 and publish their results. It it works, we might be close to having something to really help us.

    This isn't far away !
     
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  11. Mary

    Mary Senior Member

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    My ME/CFS was very slow onset - some 13 years from when my health first started to go south before I developed ME/CFS with PEM. I first crashed 18 years ago. I think severe lifelong stress (there was some childhood abuse) was a major factor for me in developing ME/CFS. I also have had high EBV, Coxsackie B and HSV6 levels. I think it's possible the stress did a number on my immune system, which allowed the viruses to flourish which may have then induced ME/CFS. But it's just a theory. I did not have a sudden viral onset as many do.

    My worst symptom is PEM (I'm only able to do about 2-1/2 to 3 hours of light activity a day (with rest breaks during that time), to avoid crashing (PEM) the next day. Other symptoms include sleep problems (which I'm managing with a veritable cocktail of supplements), low NK cell count, weak adrenals (for which I take an adrenal glandular and pantothenic acid) and weakened immune system. I did have several digestive problems, including a toxic liver (could not tolerate alcohol) and malfunctioning gallbladder and low stomach acid, but my chiropractor who does muscle testing helped me with all of these issues and my digestion now is pretty good, and I can drink wine now without getting sick too, which is nice! Without my chiropractor I would be much worse off.

    I don't have brain fog or cognitive problems and have no idea why. I also don't have cytomegalovirus and have wondered if that is a factor in my lack of brain fog etc.

    eta: I'm also hypothyroid.
     
    Last edited: Jan 18, 2017
  12. JaimeS

    JaimeS Senior Member

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    I've noted a definite shift in the atmosphere here, and both a rise in the quality of (and an increase in the number of patients involved) in research. It used to be all these 25-person studies conducted by a medical doctor with little knowledge of research design.

    Now it's Stanford. Columbia. Cornell.

    Now it's 200 patients and 100 controls.

    There is huge momentum. Whether or not it will translate to results, only time will tell.

    -J
     
  13. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    I've been ill for more than thirty years, and I definitely think there's been a change in research. There seems to be convergence going on. And as Jaime says, at very respectable institutions. I think the Norwegian researchers have proved to be an absolute goldmine. As far as I recall, the Cyclophosphamide drug seemed to work on some of those who didn't benefit from Rituximab, but more trials need to be done on that. I think the phase II trial of that drug ends this month - assuming I'm not misremembering. I hope we don't have to wait too long for the results.
     
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  14. Murph

    Murph :)

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    Seems like they've added six months to the trial duration so they can do extra follow-up. Source

    "Status, CycloME part A
    The medical intervention phase has been completed, and all participants are now in the follow-up phase. We have applied for an extension of the follow-up period by 6 additional months, thus completing the trial in July 2017. We are aiming to publish the results from the CycloME trial, part A, in 2017"


    That means the CycloME trial will end only just before the unblinding of the Rituximab Phase III in October.

    When they finished their Rituximab Phase II trial it took about 18 months for the paper to be published. Hopefully this time it all happens a bit quicker! If they get the Cyclo one done before October it will also give them clear decks to quickly get the Ritux paper out sooner rather than later.

    The one thing we know about the Cyclo study though, is that it was working for 40% of patients at least. They said they'd extend it to severely ill patients if it worked for >40% of mld/mod patients and have made that extension.

    However, the extension is just a pilot study. I think the side effects of Cyclo might a bit more extreme.

    They say this:

    "We have concluded that in order to extend the trial to include patients with severe to very severe ME, we need to adjust the protocol and plan the intervention and follow-up of each patient with great care. In order to gain more experience with this highly vulnerable group of patients, we are planning a pilot study involving a smaller number of participants."

    In summary, the second half of the year could be very exciting. (or, I suppose, it could involve an exceedingly disheartening trip back to the drawing board!)
     
  15. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    That's very interesting - thank you! They seemed pretty chipper about Cyclo at the Fort Lauderdale Conference, though, yes, they did say ME patients get worse side effects with it than cancer patients.
     

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