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A LOT of totally incorrect/wrong information and advice given

Discussion in 'General ME/CFS Discussion' started by leokitten, Oct 18, 2013.

  1. leokitten

    leokitten Senior Member

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    Hi all,

    I am a new member and newly diagnosed, posted my introduction and story

    Since I felt I had this disease I've literally read hundreds and hundreds of blogs, forum threads, web sites etc. and literally ALL of the research papers and clinical trials and literature related to CFIDS to educate myself and fully understand how to attack this disease and fully recover.

    I don't want to make a negative post and maybe it's been said before I am just writing this to reiterate to people to BEWARE.

    As a biologist and scientific researcher of many years one thing that struck me is the shear volume of totally incorrect/wrong information and advice given by forum members who clearly don't completely understand what they are writing and have ideas/make assumptions/make decisions based on this completely incorrect information, i.e. they didn't totally read or understand the research or got partial information and are extrapolating based on that or are just passing on wrong information without researching and finding out the truth themselves.

    This is not good as I see so many people base their treatments on advice of what to try from others. I know it is hard to know which people are passing on correct information or not but let me tell you how many times I seen people say to do something based on some "fact" they know when in truth the fact is totally wrong, it could be the opposite of what they think or not true at all.
  2. peggy-sue

    peggy-sue

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    Many folk feel a strong need to be doing something about it.
    as the old saying goes -" 'Tis better to travel in hope than it is to arrive."
    It's not my place to tell folk what to do, or to destroy their hopes, or tell them their beliefs are wrong.

    I do worry about them though.

    I'm not trying any protocols. They scare me.
    Coming from a background in biopharmacological research, I'm a bit aware of how little we know about how the body works, and that tweaking one thing in one direction will pull all sorts of other things out of kilter.
    merylg, Waverunner, Wayne and 7 others like this.
  3. leokitten

    leokitten Senior Member

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    I do think you should always be doing something about this disease, that is for sure.

    One thing I can tell you from all the research, information, theories, patient histories, etc. I've read and while not a 100% proven fact it is likely true: the longer you are suffering from this disease and not treating the causes the worse and worse you will get and the chances of recovery get slimmer and slimmer.

    I believe people should:

    1) Very importantly get as much data as possible about what is going on inside their body. Get every possible lab work and test done to uncover every possible cause/contributing factor to the disease in your body. Getting the complete picture is vital to effective treatment and full recovery.

    2) For each discovered cause/contributing factor find out the most effective and scientifically proven treatment and try as to treat them together at the same time when possible unless there is a known reason not to do so. Of course if there are drug interactions or if some combination you are sensitive to or your body just cannot handle so many treatments at once then simply treat together what you can.

    Otherwise since this disease is so multifactorial it will literally be a game of whack-a-mole for the rest of your life.

    For example if you have measured high antibody titers to HHV-6 you should obviously take Valcyte for at least one year. It's the tried and true treatment for HHV-6 infection and scientifically proven to work. If you also had some other uncovered cause/contributing factors in your lab work you should not wait until the Valcyte treatment is completely over a year later until you start attacking the next problem, and so on.

    There is a likely chance that because you didn't treat the other causes the HHV-6 will just come back because your body is still "broken" and susceptible and you've wasted all the gains you've made the entire year taking a toxic drug. Or even worse the Valcyte might take much much longer than a year to bring your viral load (shown by antibody titers) down because of the other causes/contributing factors preventing it from being as effective as it could be.

    I am literally treating every known cause/contributing factor (based on lab data) that I can to my disease now at the same time. I had to read every possible interactions and potential issues of all the medications and supplements I'm taking and for safe measure I get a CMP with Diff and CBC every 2 weeks to make sure everything is OK.
  4. peggy-sue

    peggy-sue

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    Yes, but getting tests and treatment depends on where you live.
    I'm in Scotland, in the UK. It's even different in Scotland to England.

    If you are in the uk, a "diagnosis" of "CFS", means no more tests, no help beyond GET and CBT if you're in England - or simply left to rot in Scotland.

    The NICE guidelines specifically instruct "no more tests" - because it encourages us to think we might be truly ill.

    Wheelchairs/disabled parking badges are not recommended - because that would stop us from trying to go out and do things on our own.
  5. leokitten

    leokitten Senior Member

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    I sincerely apologize, yes I've read so many many posts by people in UK, Canada, and Australia where due to the strict national healthcare rules if you don't have a ton of money you are literally stuck which is absolutely a complete disservice they are ruining peoples' lives.

    Unfortunately these types of systems to control costs and always be on the safe side will only approve treatments that are very established and for diseases like CFIDS which is very complex and not fully understood they will not allow the progressive treatments which scientifically have shown to be effective but haven't been fully established as standard of care (which takes forever and leaves so many people to suffer for years and years).

    As a biologist and biomedical researcher I believe that you actually can fully recover from this disease if you catch it early enough and uncover and treat all possible causes/contributing factors as much as possible at the same time.
  6. Lou

    Lou Senior Member

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    We've had our share of scientific researchers get it wrong as well. Plenty of them, and terribly wrong. The CDC and NIH, for example, labeled us psyche cases for years, ridiculed our plight and the heroic pioneer doctors that tried to help us.

    Your lack of specificity would leave us to trust virtually nothing we learn here. Should we just disband, wait on news from the researchers?
    M_Dramatic, Wayne and aimossy like this.
  7. Tito

    Tito Senior Member

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    Well, lab work is just measurements. It says nothing about cause or contributing factor. If your hormonal levels for example are too low or too high, it just means they are too low or too high. Lab work cannot specify whether this measurement is unrelated to ME/CFS, is a cause of the disease, is a complication after years of ME/CFS or is just an adaptive process that the body uses to limit the impact of a pathogen for example. I nonetheless agree that if a virus or a bacteria shows up in some lab work, this is clearly not an adaptive process, but many people "only" have abnormal hormonal levels, abnormal immune cells, abnormal enzymes and/or vitamin levels. Many doctors associate an abnormal result to a 'cause' (low iron? Take these supplements and it will cure you). In many cases, people remain unchanged or even get worse.
    My personal opinion is that the main problem is that the multifactorial causes cannot be differentiated from the multifactorial adaptative processes at this stage. Until we make that differentiation, there will be no real hope for sufferers. Talking about the "complete picture" at this stage is premature in my humble opinion.
    Sidereal, EMilo, merylg and 11 others like this.
  8. Lou

    Lou Senior Member

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    leokitten said, "...due to strict national healthcare rules if you don't have a ton of money you are literally stuck...

    You prefer a system where Blue Cross took my premiums for years and dropped me like a slab of week-old meatloaf as soon as I was diagnosed with CFS?

    You're newly diagnosed, please consider a trace of humbleness with your advice. Some of us have been around a block or two with the mainstream medical system here in the US.
    Tristen, Delia, Snowdrop and 6 others like this.
  9. leokitten

    leokitten Senior Member

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    You are completely misunderstood and are misrepresenting what I said, completely.

    I am saying that I've read many many posts by forums members saying totally incorrect information and giving advice based on that when there are certain known facts about something but they are not getting the facts straight at all and then propagating this misinformation and I think this is dangerous.

    This has nothing to do with NIH, CDC, scientific community getting things wrong. Nothing to do with trying something that might work. Totally different topics.

    If you want certain examples of this I will post it. I have even read posts where people's doctors give them blatantly wrong information and they make choices based on this, let me tell you medical doctors are not scientists and many of them not critical thinkers, from what I've seen in my visits most of them do not keep up with any research or newly acquired knowledge or also do not understand the science behind things and literally have to be told.
    helen1, Wayne and Katherine like this.
  10. leokitten

    leokitten Senior Member

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    Again Lou, you are being angry here read what I wrote did I say ANYTHING about ANY medical system being better or worse than ANY other???? No not at all! You are putting words into my mouth, I just said that I've read many posts from people in those countries being denied treatment.. THAT'S IT. Do not put words that are not there.
  11. caledonia

    caledonia

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    Anything posted is given with the understanding that it is not medical advice, just educational, and that the persons reading it will be working with their doctors and not just trying things out willy nilly. Although, due to the horrible state of medical care for this illness, I'm sure that it does happen.

    In that case, they should be researching things very thoroughly on their own before trying anything, and when they do try something, it should be done very cautiously, starting with very low doses. And that anything that happens when they do try things on their own is their own responsibility.
    Wayne, Delia, Snowdrop and 7 others like this.
  12. Lou

    Lou Senior Member

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    I'm not putting anything in your mouth. I asked you a simple question that you chose not to answer. Having said that, since you pointed out it was the national (my emphasis) healthcare rules, not less political like simply healthcare, your sentiment is not altogether a mystery.
  13. Tito

    Tito Senior Member

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    On the other side, we cannot blame patients because they believed what a health professional told them (especially when they spent large amounts of money to see them, sometimes at the detriment of other expenses, such as their children's education). We cannot expect every single patient to turn into a PhD-level researcher in biochemistry. But I agree that patients should be more cautious about the information given to them, about the fact that sometimes they are used as guinea pigs without being properly informed. Most of the ME/CFS "treatment industry" is pretty much charlatan-based as far as I am concerned. And patients perhaps do not see that clearly enough. They are so desperate that they just want and NEED to believe there is a treatment out there for them.
    Sidereal, Tristen, Wayne and 9 others like this.
  14. leokitten

    leokitten Senior Member

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    Sorry I used the word national because these countries have nationalized (single-payer) government run healthcare systems and in these particular government healthcare systems they have strict rules on what treatments and tests can be done. But trust me I have no opinion on which system is worse or better.
    peggy-sue likes this.
  15. Lou

    Lou Senior Member

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    Fair enough.
    aimossy, peggy-sue and leokitten like this.
  16. leokitten

    leokitten Senior Member

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    True, I do not expect people to, just wanted to say that you should even be careful what the man in the white coat tells you, just because he went to medical school doesn't mean he even understands basic scientific facts or concepts.

    And I agree with you so much of the treatment industry is snake oil and will do at best a placebo effect, or nothing, or worse even harm to you. It's really tough because of the nature of this disease and the desperation that comes with it.
    Sing, Snowdrop, aimossy and 1 other person like this.
  17. Tito

    Tito Senior Member

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    The desperation in that illness is just terrible, and it leads us to accept the unacceptable really... :(
  18. Lou

    Lou Senior Member

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    I understand you think I'm just angry. I'm not. It's just that so much of this is preaching to the choir. You do, don't you, know most of us started down this road a long time ago? We've been given meds that made us much worse, doesn't take much of that to learn pretty quickly what you are saying.
    Tristen, Sing, Wayne and 3 others like this.
  19. GracieJ

    GracieJ Senior Member

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    leokitten. I am curious. How long has it been since you started to believe you had this, and how long did it take to read the thousands of pages of material on the subject?

    If you are newly diagnosed and making progress, great! Do not ever forget, however, that this can turn sideways and go somewhere else you never imagined. There is an informal recognition among the ME/CFS online patient group that until you are symptom-free five years, be careful saying what works, because many come on here expounding the virtues of a given treatment - and a month or so later, find themselves in a deep and total crash yet again.

    I think most on here benefit greatly hearing each others' experiences. Who can really say what advice is "wrong" anyway?

    Walk a mile in my moccasins, please.

    23 years of ME/CFS and multiple losses to go with it - relationships, credibility, jobs, cars, housing, self-esteem, self-confidence, had to declare bankruptcy, have had to go without health insurance, and the list goes on. My story is not uncommon. Most here have similar tales.

    If you are avoiding such a plight, wonderful. Never forget the hundreds of thousands who have come before you who have had the syndrome for decades. Their treatment plan is going to look very different.
  20. snowathlete

    snowathlete

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    Depends who you see. I don't know who you're referring to specifically, but a number of ME/CFS clinicians are also actually scientific researchers as well and are extremely knowledgable and up to date on what is currently known about the disease(s).

    I agree that there is sometimes bad advice and information given in forums and even some formal articles on some sites. But many patients have had the illness a long time, are very knowledgable and have read tens or hundreds of thousands of blogs, articles, forum threads, attended conferences and read much of the peer reviewed research into ME/CFS, and like you many come from useful backgrounds too. So again, it depends who is giving the information. Ultimately it's up to every person to do their own research and to check what they read for accuracy, and/or see a specialist who has the education and experience to guide you.

    I do agree with you that your best chance of recovery is to tackle it head on and early before the disease progresses, but for those that have had the disease for some time it is often not possible to treat everything at once; some people cannot even tollerate taking a single drug or supplement to tackle one element of their illness at a time, and others manage but cannot do it all in one go.
    Leopardtail, merylg, Wayne and 5 others like this.

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