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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. GracieJ

    GracieJ Senior Member

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    Amen. One person's life-restoring remedy can be another's nightmare.

    I think one of the biggest issues faced here is that treatments have to be done in careful sequence, and not enough is yet known. It is difficult to get thyroid problems back on track, for instance, if the real problem is the adrenals, and if the real problem behind that is within the ANS after years of poor treatment. Add on the stress of being sick while waiting for results, and it snowballs.

    The largest piece I have seen that we all have in common is that improved sleep has to happen first before anything else can work.
    WoolPippi, Sing and Delia like this.
  2. Nielk

    Nielk

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    How constructive is this comment,when you use it as a blanket statement about "the shear volume of totally incorrect/wrong information". One can probably make the same statement on any forum of ill patients.

    If you see a specific blatant "incorrect" statement, please notify us and let us know of the "correct" information - if your aim is to be helpful.
    Tristen, Sing, beaker and 8 others like this.
  3. leokitten

    leokitten Senior Member

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    I started to realize that CFIDS might likely be what I have this summer after basically ruling everything else out seeing every doctor and doing every test imaginable after getting suddenly ill in January. So it's been months and let me tell one can do a lot in a few months when you are determined and especially if science is your background. I have spent all of my time reading basically everything I can find since the summer and when I finally found my CFIDS doctor and research working with her.

    I am a scientist and researcher at the National Cancer Institute/NIH and am very used to having to go through hundreds and hundreds of pages of material and concepts to put pieces together. If there is one disease that is definitely one of the most complex in the human body it is cancer.

    My family and friends thought I was crazy with how much work I have been putting into this but as I told them this disease is horrible I don't want to get worse, the longer I am ill without treatment the lower my chances are, and no one is going to help me out of it except me so I better not waste any time while I still have some energy and will.

    Literally most everything else in my life has been put on hold because I know how important it is to fight this now.



    Did I ever write anything about what treatment works or what doesn't? No, I simply said get as much data/information as possible and used a multi-faceted treatment approach. Who would disagree with that?



    When I say "wrong" i mean clearly wrong: that there is a known particular fact about something and they don't understand it and write like they do saying something that's not right.

    I'm not talking about things like "hey I don't think Anti-Yeast works for Candida" or "this methylation protocol is better than this one" where it is clearly not possible to prove someone is wrong. I'm talking about things like basic drug facts or biochemistry facts or disease facts that I know they are not getting right and misrepresenting and then deciding to do something using this misinformation or give advice based on that. This is not good.
    Soundthealarm21, Sing, Simon and 6 others like this.
  4. caledonia

    caledonia

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    @leokitten That makes sense that you're a new patient, just discovering the sad state of affairs with this disease.

    I think that would be great, given your background, if you could chime in and make corrections where people are getting the facts wrong.
    Tristen, Marlène, Sing and 15 others like this.
  5. leokitten

    leokitten Senior Member

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    Trust me Nielk, I will whenever I see it from now on. As you can see I just joined the forum last week. It wasn't my highest priority up until now as this disease has turned my life upside down and I have had to spend literally all of my time and energy to so quickly get where I am. I hope you can undestand.

    I just was shocked that over these months how much basic information was being disseminated that was totally incorrect that's all and that people really really need to beware
    Sing, Waverunner, brenda and 4 others like this.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    leokitten

    I think everyone here is "hungry" for scientific facts and will really appreciate it if you can point out where misinformation may lead to mis-treatment--either self treatment or treatment from a health professional. Forums are by nature places of many opinions and experiences but having access the correct scientific information is critical for all of us.

    Welcome to the forum!

    Best,
    Sushi
    Tristen, EMilo, Sing and 13 others like this.
  7. GracieJ

    GracieJ Senior Member

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    leokitten I admire your level of knowledge. I am also quite happy to see someone without brain fog. Your knowledge and expertise could go very far helping others.

    Could you give me an exact example of "basic drug facts" misrepresented?
    Sing, brenda, taniaaust1 and 4 others like this.
  8. Esther12

    Esther12 Senior Member

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    Welcome Leo.

    With CFS, there do seem to be many more false claims tan reliable ones. If you catch me saying anything you think is inaccurate, please jump in with a correction! Hopefully a forum should allow a way for people to try and correct and challenge one another.

    I'm not sure how good the evidence is for any of the claims made about CFS, including some of the ones about hhv6.
    Sing, brenda, aimossy and 7 others like this.
  9. Nielk

    Nielk

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    I am truly sorry that you have been so ill with this disease. Believe me, I as well as most members here can appreciate how this illness can destroy lives. I welcome you to the forum. I am sure that you are right in stating that there are information disseminated here. ( I am sure inadvertently)

    We are just mostly very ill patients trying to make sense of a very difficult complicated situation. Some others here on the forum who have biological or scientific backgrounds try to help us make sense of things. In that vain, if you see some red flags, please let us know. We would appreciate helpful feedback.

    Some posts though are anecdotes of 'what has helped me in this situation'. We are all eager to hear if someone has been helped somewhat, since we are all basically hungry for any treatment that could help us.

    Someone with you experience and level of understanding could be a great asset for us.
    Sing, beaker, Indigophoton and 7 others like this.
  10. leokitten

    leokitten Senior Member

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    I totally agree and well written, I think I was misunderstood by complete picture what I meant by it is to have as much information and data as possible with today's tools and technology to use, my apologies. Lab work, other tests, clinical examinations, etc... I don't think any stone should be left unturned, it is always better to have as much information and data as possible, always better than being in the dark.
    aimossy and Sea like this.
  11. wdb

    wdb Admin

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    I wouldn't say that that necessarily makes us worse off in the UK, NICE guidelines are useless but they only dictate what testing/treatment you can get provided for free. The US spends more public money per capita on healthcare and you don't get anything for free.
  12. peggy-sue

    peggy-sue

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    :p
    Give me a lab, the equipment and the methodology and I'd be doing the tests myself.......

    wbd, you said;
    " wouldn't say that that necessarily makes us worse off in the UK, NICE guidelines are useless but they only dictate what testing/treatment you can get provided for free."

    I wasn't making any sort of comment about either system either,

    just pointing out that I am in a position where I cannot get any relevant or meaningful tests done in order to find out how I need to correct anything, after being advised to do so.

    My gp even refused me an ecg trace, (far less a Holter monitor), despite my fainting everywhere and producing evidence of very low and peculiarly behaving blood pressure via a small electronic sphygmomanometer which held records.
    Waverunner, Delia, justy and 3 others like this.
  13. leokitten

    leokitten Senior Member

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    I do have brain fog, some cognitive issues and other neurological problems, they are some of the worst symptoms. But as you know with this disease everyone is affected differently.

    It fortunately hasn't affected my ability to understand concepts, critically think and put piece of information together, it affects other things like I can zone out sometimes or when I speak now sometimes I jumble words, or I forget where my wallet or keys are and many others but fortunately it hasn't really affected the scientific part of my mind.

    I will have to find again all the posts, it wasn't my priority at all to keep track of this I hope you can understand but I will remark from now on when I see it.

    For example since I have very high titers for EBV, CMV and HHV-6 I've read all the background research and information on treatments, etc. Many "facts" I've seen people post about Valcyte, Famvir, Valtrex, Cidofovir etc are just wrong, things like their mechanism of action, or one drug is clearly better for this than another because of "fact" X (which is not true), or that this drug is causing them problems because of "fact" Y (which is also not true)
    Sing and aimossy like this.
  14. chronix

    chronix

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    You've read, besides presumably tonnes of information and media on the internet, all of the literature on CFS - over 5000 (or more?) papers since being diagnosed? I must say that is quite a feat. I don't think even top (and superbly healthy) CFS researchers are capable of doing that.

    When were you diagnosed? I had trouble reading basic text not long after I got ill and I still struggle finishing a light novel.

    Since you know everything about this disease, including how to fully recover - note, not mere remission, something many people on this board would give anything to experience - would you mind sharing some of this knowledge with us?
    Wally, taniaaust1 and GracieJ like this.
  15. wdb

    wdb Admin

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    So what have you learned regarding how to attack this disease and fully recover that is supported by a sound scientific evidence base, I wasn't aware there was much ?
    taniaaust1 and SOC like this.
  16. leokitten

    leokitten Senior Member

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    I certainly will, honestly I feel it is a duty because this disease is horrible I feel not really "alive" anymore and we need to help each other out . When I first realized that I might have it and read so many stories of people living with it for 10, 20 years or more I broke down into tears out because the hell its been just having this 9 months and how much it has already taken away from my life I felt so bad for others having to live so long with it like this and not being able to get help years ago because much less was known.
    EMilo, Sing, beaker and 11 others like this.
  17. GracieJ

    GracieJ Senior Member

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    leokitten

    Welcome to our world. We are a tough crowd to write for, as you are seeing.

    We'll love you anyway.

    I, for one, am interested in following your recovery story over the next months and years, and hope you stay with us.

    On another note mentioned in the thread:

    One reason people who have recovered are not on here writing is that they are busy getting on with their lives after a very unpleasant Rip van Winkle existence. Another reason is that even when the recovery story is about someone who had a clear-cut case of the syndrome writes of recovery, the backlash is huge. One has to be quite thick-skinned to share.
    aimossy, Delia and justy like this.
  18. vamah

    vamah Senior Member

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    I think there's been some overreaction on this thread. I am always seeing debates on the forum over various treatments and the validity of the science behind them. I don't think there's a need for nastiness, although the brashness of the oringinal post was a bit offputting, I think it was not intended that way.

    And I say this as someone who was once told by an INFECTIOUS DISEASE SPECIALIST that herpes viruses simply cannot reactivate later in life (Hello! Shingles?). So I am not one who accepts information uncritically from anyone.

    I just think we should keep the debate civil.
    Marlène, Sing, beaker and 10 others like this.
  19. leokitten

    leokitten Senior Member

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    What I've learned is that nothing has shown to be a definite proven treatment that will always work for everybody, but that the earlier in the disease process you begin treating it the much higher your chances are of fully or mostly recovering, and that you must take a multi-pronged/faceted treatment approach by first getting as much data/information you can about what are the possible causes/contributing factors to your particular disease and using that information to design a treatment plan. When deciding what treatments to do over others in certain aspects of CFIDS certain treatments have more sound scientific evidence behind them than others.

    For example in the area of viral infection contributing to the disease and or symptoms, if you have high CMV and/or HHV-6 titers then taking Valcyte is so far the most scientifically reasonable thing to do.

    Someone else wrote that lab tests and other tests and clinical information are just measurements and not necessarily a good guide to determine cause and therefore treatment. But what is the alternative just to take shots in the dark? It is always better to have as much information as possible regardless if you are going to use it to decide on treatment.
    bigmama2 and taniaaust1 like this.
  20. Sea

    Sea Senior Member

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    I agree but sadly, as others have noted, access to testing is not always available. To try to access testing one has to be prepared to be ridiculed, abused, accused of drug seeking, malingering, being a hyperchondriac... and all while paying for the privilege.

    Many give up on doctors having never had more than the most basic of testing done let alone the opportunity to leave no stone unturned. It is an incredibly frustrating place to be, knowing something is physically wrong but having no access to testing that might unravel the puzzle.

    In my country I know of 2 doctors who would probably give me access to some of this testing. They are both in another state and have waiting lists of over a year. In fact I think one has closed their books to new patients.
    Sing, beaker, Waverunner and 6 others like this.

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