Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Is ME a more curable illness than other serious conditions?

Discussion in 'General Treatment' started by silky, Jul 25, 2017.

  1. silky

    silky a gentle soul here to learn

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    After the rousing discussion we all had on the encephalitis thread, the consensus seems to be that any permanent damage is relatively minor and impairments causing symptoms are largely functional and theoretically reversible.

    Thanks to everyone for the great input!

    Here are my thoughts for the notion that it may be more easily curable than other debilitating diseases like MS, Alzheimer's, ALS, Parkinson's, classical encephalitis, or brain cancer.
    1. There is little evidence of major permanent organ damage
    2. Spontaneous remissions to full functionality for many patients
    3. Normalizing of sick cells in healthy blood
    4. Normalizing of SPECT and MRI after treatment
    Could the right drug or therapy really flip the switch in a way that isn't possible for other major diseases?

    Would love to hear from all the smartypants! :)
     
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  2. NotThisGuy

    NotThisGuy Senior Member

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    Can only report from my own experience:

    I took B1 and for 2 days I felt almost cured. Next 2 months were sill great, but not the feeling of beeing cured.
    Still had increased food intake (I eat like 2 Persons and weight as much as 1/2 person). Dr. now are sure I'm anorexic :bang-head::bang-head::bang-head::bang-head:
    Especially since B1 increased my weigh and I lost it all again after I stopped tolerating it.

    At least I now found out what may cure me:
    fixing mitochondria
    raising NO
    address pryuvate dehydrogenase
    raising BH4

    I think most of it is related to heavy metal chelation so I can tolerate supplements again....time will tell...

    I read lots of time "I felt I was cured for 2 days". Most of the times it seems related to NO and mitochondria. That doesn't mean NO and mitochondrial dysfunction might be the way to go. Maybe addressing those just eases the symptoms and not the root cause. Maybe thats why it always fails after those 2 days followed by a severe crash.

    So yes, I believe there is a switch.... but I don't see any medication in the near future.
    I think first of all smartypants who get paid need to find out what causes CFS.

    Some say CFS has different metabolic malfunctions in every patient but I think its the same malfunction with us all.
     
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  3. silky

    silky a gentle soul here to learn

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    Interesting, what makes you say that?
     
  4. Alvin2

    Alvin2 If humans were rational...

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    I couldn't handle that thread but MS is most likely autoimmune damage, Alzheimers/Parkinsons are clear brain damage from differing causes. ME/CFS is likely something blocking energy production and the problems caused are likely from energy starvation/unavailability. So its likely once that is fixed we will be functioning again, and the different type of damage is probably repairable or at least mainly repairable.
     
  5. NotThisGuy

    NotThisGuy Senior Member

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    Everyone has different symptoms. But you always find a dozen other CFS people with your symptoms.
    Whenever a new symptoms appears I just have to google it on PR and I find threads where people report the same symptoms.
    There must be a key for all those symptoms and why certain people develope them. Maybe genetics, maybe same toxines.

    Also the reactions to supplements I have are always also experienced by others.

    But honestly no idea what it could be.
    Lots of symptoms indeed seem to be on cellular levels, because CFS symptoms always remind me of the symptoms my grandparents developed a few years before they died.

    I always like to call CFS as senile decay.
     
  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Point 1: People mistakenly telling you ME is largely a benign recoverable condition.

    The rousing discussion you speak of is false science, because the people you are talking with cannot give you any data on PWME having a largely benign condition, because it is exceptionally rare PWME are autopsied. In the people who do die young, inflammation is found in the brain (see UK cases) and in the heart (see case of Casey Fero). This is probably 8 people. We need 8,000 people who's brains or bodies are analyzed.

    So you have to be mindful that these minor changes people tell you about are people concluding on medical syndromes without data. That facts we do know is: CFS is not ME but a syndrome of unexplained chronic tiredness according to CDC.(CFS doesn't even require chronic pain) - pain is always present in an encephalomyeltiis, both in the muscles and brain, CFS doesn't require the hallmarks of ME either: Dysautonomia, Post Exertional Relapse, Orthostatic Intolerance. One exception to the rule is British CFS/ME (NHS criteria) does require PEM, but PEM is not relapse, it's feeling worse after doing something. Neurotics feeling worse after doing something, as do people with other mental health conditions based on activity phobias. So PEM is not reflective of probably or likely having an 'ME'. Having difficulty standing up is. Yet this isn't a requirement of British CFS/ME or American CFS either.

    But the real elephant in the room, is ME has no test and has become CFS due to politics.
    ME used to be tied to PVFS (Post Viral Fatigue Syndrome). CFS does not require any association to a virus whatsoever, and neither does British CFS/ME used by the NHS. So the waters are muddied, ruined actually, in terms of research.

    You have to look at this logically and without bias which the other thread is full of because 'CFS' patients are feeding you the information. They are biased, as they aren't bedridden with ME and also they aren't deceased.

    *A CFS or ME/CFS or CFS/ME patient is not a confirmed ME patient, no one is.

    *Patients in neuroimaging studies are NOT severely affected. Severely affected are too sick to be under a brain scanner. In medicine, you always study the most severely affected to find out what a disease and you certainly do not exlude patients with any sign of disease and call these people ME. - Which is what ME/CFS does and what CFS/ME does.This is because....

    *At time of diagnosis No one with ME/CFS or CFS/ME is a allowed to have anything wrong with them. Patients with ME have masses of things wrong them, all of which can be diagnosed in a doctors office.

    *These people are excluded from research. Ergo, no large study size, quality ME research has ever taken place, because the patients then breach the criteria of CFS.

    *Patients are diagnosed with a feeble requirement of 'Chronic Fatigue'. CF is not a disease, and thus your would expect the minor changes your sources have tried to influence you with. Yet your sources on the other thread are failing to adhere to even basic scientific principles.


    Point 2: ME more curable than other 'conditions'?

    Currently the official diagnosis in use for CFS, CFS/ME, ME/CFS, doesn't require a single abnormal test finding, which means misdiagnosis and guess work is normal for the physicians seeing their patients with 'ME', and thus we have no idea who has ME and who is cured because we never know if they had it or not!

    So, unfortunately, if we are to remove our own biases, then no one has ever been cured of ME as to confirm ME outright you'd have to be dead and have an autopsy and brain/spinal tissue would need to be studied under a microscope and so forth, same with Alzheimers and vCJD.

    But...as technology, specifically imaging technology advances and at the same time, scientists can determine what would cause this form of an encephalomyeltis found on scans (e.g. a specific pathogen agreed upon by multiple groups of researchers is known to damage neuron type X), then the damage ME causes should be able to be confirmed in patients who are alive.

    These patients can then be given treatments and we can see over decades who is cured, (if at all) and compare these statistical rates in order to be able to honestly answer your question.

    Then and only then can we see who is 'cured' who 'recovers' in the same way we can say with confidence who has Parkinson's and who is cured and recovered from PD.

    Ergo no one has ever been cured of ME, as first you have to be able to accurately diagnose it, and observe an encephalomyelitis state.
     
    Last edited: Jul 25, 2017
  7. silky

    silky a gentle soul here to learn

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    @Research 1st :( wow I hadn't realized all that. I guess it's understandable they'd want to make me feel better on the other thread.

    So there really is no hope for decades? What about Ron Davis saying he can solve it? What about Robert Naviaux and dauer? Is there anything to that stuff?

    Is it really as bad as Parkinson's?
     
  8. silky

    silky a gentle soul here to learn

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  9. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Well. Every disease has a cause, and is theoretically curable. When we know as little as we do though there`s no way to give an answer. We dont even know if we have the same disease. Anecdotally a minority of patients get cured/better from different treatments, so that`s a beacon for hope I would say.
     
  10. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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  11. JES

    JES Senior Member

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    ME has perhaps not been demonstrated to be recoverable, but there are case reports about chronic encephalitis that have been cured with the right medication. For example, a five year old boy with chronic enterovirus encephalitis stabilized after receiving a high-dose treatment with the antidepressant Fluoxetine (article). Fluoxetine inhibits coxsackievirus-type enteroviruses that are suspected to be a trigger for ME (article). We also have evidence of chronic enteroviral infection from brain autopsies of deceased ME patients (source). So assuming that we'll have better antienteroviral drugs in the near future, which Dr. Chia is confident on, it's not unreasonable to assume that in the subgroup of CFS/ME with viral encephalomyelitis from enterovirus (which would be the closest to classic ME), the disease would be curable.

    Having said that, I don't believe that the majority of people on this forum have this type of disease. For example, the recent Rituximab trial makes it quite far-fetched to believe that those Norwegian patients improving from Rituximab had encephalitis type CFS/ME. But in any case, there have been quite a few recovery stories on this forum. Permanent recovery seems rare, but lots of people have experienced "temporary" remissions that lasted for days. I achieve recovery from my ME type symptoms almost every time I have a cold/flu, so I can be confident that nothing is permanently damaged in my body.
     
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  12. alex3619

    alex3619 Senior Member

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    People do recover. The problem is there is no reliable treatment that leads to recovery. Most treatment is about management in some form or other. Recovery in the short term is not very common, and in the long term is rare. Short term patients will often be misdiagnosed though, and many other problems are more treatable or improve on their own.

    Now under various treatments there is a background improvement and recovery rate. We are just not in position to accurately assess them. We need biomarkers for one thing.

    The two big recent advances are the approval of Ampligen, though not in the US or most countries, and the results of Rituximab are pending. Rituximab, based on current understanding, will not help everyone. We do still need proper characterization of responders, non-responders, and complete responders who go into full remission, if that is what happens. I do wonder if instead of recovery they are really inducing long term suppression of symptoms. We need the science to be published. Fortunately we might have a clue in only months. The trial becomes unblinded later this year.

    The stories of Ampligen and Rituximab are suggestive of the time frames to get treatments even when one is found. It can take up to ten years to repurpose a drug, that is to obtain high quality evidence. Such a drug can however often be used off label very soon after its discovered it works. If new drugs are required then we might be talking more like 20 years. Existing drugs are therefore faster to get approval for.

    Its not accurate to say we know for sure there will be no treatments soon. Some treatments do not require the full approval process. Rituximab might start being used clinically as early as next year. Ampligen is already in limited use. Quite a range of treatments provide some improvement, typically small, or help manage symptoms.

    However it would be accurate to say that if ME is caused by something outside of regular research experience, and requires new drugs or methods, then I will not see such drugs in my likely lifetime, though I am now in my late 50s. I have been needing that cure for possibly 49 years now.

    It is also the case that a repurposed drug can be approved much faster if there is political will. It is therefor partly up to us to push for any such drug that is identified. This is made easier by the nonexistence of treatment drugs approved by the FDA and other agencies elsewhere. Fast tracking approval might be acceptable under such conditions.
     
  13. Murph

    Murph :)

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    I'd say he's spot on. CFS patients don't know the truth. The one thing he's missing - and it's a big thing - is that he also doesn't. Classic human thought-pattern: I carry the torch of truth through the teeming ignorant hordes!

    Anyone insisting they know how the subsets of this disease line up is full of it. It could be many disease mechanisms, could be one, etc. Only research will tell. Smart play is to leave all options alive in your mind.

    You can spy the cracks appearing in Research 1st's arguments above. For example, this sentence: "At time of diagnosis No one with ME/CFS or CFS/ME is a allowed to have anything wrong with them. Patients with ME have masses of things wrong them, all of which can be diagnosed in a doctors office."

    That's not right at all. The person seems to be stuck on the idea CFS is a diagnosis of exclusion. Which it was once but no longer is.

    At a meta level the problem is that human minds abhor uncertainty so we pick a theory we like and then exercise confirmation bias - reading things that back that theory up. In environments like ours - rich in theory, threadbare in data - this is a dangerous approach! Keeping an open mind is hard work, but worth it.
     
  14. Snow Leopard

    Snow Leopard Hibernating

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    It's impossible to say until we have efficacious treatments.
     
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  15. Sushi

    Sushi Moderation Resource Albuquerque

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    I believe that this is greatly overstated. Rather, I'd say, this happens for a few.
    Totally agree.
     
  16. alex3619

    alex3619 Senior Member

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    We just don't know. Many subgroups have been found, but such groups might not be actual clinical entities, simply artifacts of particular studies.

    In general, if something is important, I try to apply the philosophical position of questioning everything. This especially includes things you are sure about.

    My current leading hypothesis is that ME is at least two different diseases, and maybe three. I say leading as it is subject to change with new evidence. Its an hypothesis because just about every claim about ME has yet to be proven to a high standard.

    CFS is of course another issue, as depending on the definition it might well include a diverse array of conditions lumped together.

    For most of the world it appears it still is. It might not have to be, but most doctors and medical watchdogs have not woken up to what we do know. The IOM report, for example, is still heavily disputed on some matters, and has yet to be widely recognized. From what I can see most doctors seem to consider ME to be some kind of chronic fatigue, and they want to exclude every other disease they can think of that might cause this. When I press doctors on other symptoms they usually want to change the subject.

    Until we have published biomarkers that are shown to be reliable, and that might or might not include subgroups, the situation is not very likely to improve. Some few doctors will closely follow the science, some more will at least look at the science, and the rest will wait for a guideline to be given them by some medical watchdog, such as NICE in the UK.

    If we do find a good reliable treatment then it will be partly up to us to ensure that the news gets out to the medical community. That took the gastric ulcer community about ten years ... doctors did not want to know most cases could be treated with antibiotics. However some doctors did begin treating gastric ulcers very early on.
     
  17. Woolie

    Woolie Senior Member

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    I don't think anyone here should be claiming to know the truth about what causes ME or CFS or both. No-one knows that, its all theory right now. But of course, some explanations fit less well than others.

    @Research 1st is also referring to a long running debate as to whether ME denotes a different illness to CFS. According to this view, ME is a more narrowly defined condition that is qualitatively different from CFS, and that involves the brain. In contrast, CFS is a catch-all for a host of problems, some of which might be psychological. So by this view, a person with "genuine" ME might meet the diagnostic criteria for CFS (simply because they are so broad). But not all people with CFS will necessarily have ME.

    Those who consider they have "true" ME sometimes want to separate themselves from those who have mere CFS, and they feel that the inclusion of the latter in research studies has led to the sidelining of their very serious illness.

    I'm not saying @Research 1st is claiming this. I'm talking about the debate more generally.

    There could be some value for research purposes in studying the most narrowly defined version of the condition - so you can have more confidence you're studying a single disease process. But right now, we just don't know whether people who earn the label CFS have a single common underlying disease, or whether the disease splits along the lines suggested by the "pure ME" advocates, or whether it splits along some other lines. It could be one disease, two different diseases or a much larger collection of diseases that may just present with some similar features.

    I feel that, whatever the answer turns out to be, outside the research world, we should be focusing on uniting, not splitting. We all share the experience of invalidation that comes from others believing our problem is psychological. We should all be standing up together against this practice as a united front. The last thing we should be doing is saving a space on the lifeboat for ourselves and letting everyone else drown. That would make us worse than the psychobabblers - because we've been on the other side, we know how wrong it can be, and we ought to know better.

    On some things, @Research 1st and I agree. The practice of excluding severe patients, and excluding anyone who shows any documented abnormalities means we are creating a science based on the mildly affected. Many people think that research should start with the most severely affected.
     
    Last edited: Jul 25, 2017
  18. Woolie

    Woolie Senior Member

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    On the issue of autopsy, I'd also like to see these done more often, because even nowadays, there are some things you can find in an autopsy that you can't find using imaging.

    But autopsies are no longer the privileged conduit to information that they once were. You can tell lots of things from a scan - not just whether there is overall shrinkage of brain volume, but also abnormalities in white matter, small regions of dead tissue and even the presence of particular proteins associated with very specific pathology (e.g., tau proteins). Some things you can find out through imaging you can't see in an autopsy. An example is the white matter tracts. When you cut the brain up, its hard to see the pathways of the smaller white matter tracts. Some of these have only recently been identified, and only through imaging.

    You also can't see perfusion abnormalities in autopsy. For obvious reasons.
     
  19. daisybell

    daisybell Senior Member

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    I don't know this for sure but I think I have read that auto-immune conditions can spontaneously go into remission permanently. If ME/CFS is, for at least a significant percentage of people, an auto-immune condition, then it follows that recovery is possible....
    I believe that Fluge and Mella have had some ritux patients who have remained in remission.

    No-one recovers from a disease like Parkinson's...
     
  20. silky

    silky a gentle soul here to learn

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    Ahhh but wait! What of the well defined Dubbo studies in the great land of Australia that show all but 2% recover in the first 4 years?
     

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