Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Most effective treatments spreadsheet

Discussion in 'General Treatment' started by underdog, Apr 9, 2012.

  1. underdog

    underdog

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    https://docs.google.com/spreadsheet/ccc?key=0Asa09r5BszcvdFlOVU5TbGItNUU0RUJndVIybmMtUmc#gid=0

    Hi,
    I have thought of condensing into a spreadsheet people's experiences with effective treatments, which was started in another thread.
    It seems from that thread that there are treatments that help people really move forward and those that make illness or symptoms more manageable.
    I tried to structure the spread so that effective treatments are not viewed in isolation but link a bit with background and main health issues. This may help assess treatment success in context and give a better understanding of its potential.

    I would be grateful if anyone interested could fill the spread as much as possible. I believe it could give a very helpful view of treatments that actually improve people.

    It would be great if we could focus the spreadsheet as follows:
    - Please list "big movers" only, meaning those treatments that helped someone move up the PR activity rating by at least 1 level.
    - Please list one treatment for each row, for any "big mover".
    - Please add rows as appropriate in alphabetical order to make it easy to find people (assuming the spread will grow with data).

    I tried to pre-fill with data from the other thread for some respondents.
    I only did those posts that were easier for me to interpret and restructure so please have a look and amend where necessary.
    Also I reported just one of the treatments listed, assuming the one with the largest improvement was the main driver of a move up the activity scale.
    However, list any other that may have helped in moving up the scale any further.

    I'd really appreciate if anybody who has experienced an effective treatment can share their information in the spreadsheet for the benefit of all of us on this forum.
    Many thanks.

    PS: Anybody who has ideas for making the spreadsheet better please post it.
     
    L'engle likes this.
  2. Sushi

    Sushi Senior Member Albuquerque

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    One thought and the reason I have not posted on this thread is that some of the treatments are synergistic, some build on ones before them--meaning to have success in one, you might have to do another treatment before hand.

    I am not sure how to fill out this spreadsheet as I am on a very helpful protocol but no one element really "stands" without the others, and some things (for instance appropriate testing) are necessary to screen to get an idea if certain treatments will work for you.

    If someone doesn't have a certain virus, taking a medication for it will not help them, while it may be very helpful to the person who has that virus.

    Also, when you say one line per treatment option, do you mean one block or to list them all in one block?

    Thanks,
    Sushi
     
  3. Xandoff

    Xandoff Michael

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    I agree with Sushi. We all live in one room school house and we are all at different places in treatment and in health. Designing a spread sheets for such a complex group of people is a thankless and difficult job. With that said I thank you for your input underdog. I realize I am not adding anything positive here except to highlight the difficulty of organizing this. The only advice I have to offer is to keep it simple Sam. KISS
     
  4. Nielk

    Nielk

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    Hi underdog,

    I think that this idea of this spreadsheet is great. I thank you for your time in putting it together. I agree that the simpler we keep it the better. I think everyone understands that there are so many variables that contribute to the successes or failures of different treatments. There is also as Sushi mentioned a big variance as to different PWCs specific problems. There must be a way that this van be added to the spreadsheet. In other words instead of saying B12 helped my overall health by 50%, One should be able to say because of my problem that showed up as ...... B12 helped me regain....... or something to that effect.
     
    garcia likes this.
  5. ukxmrv

    ukxmrv Senior Member

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    I'm concerned about having a successful treatments spreadsheet that doesn't report on adverse and severe reactions to the same regimes or just the simple failures.

    A treatment may help (for example) one in a hundred and damage another twenty. The twenty go unreported here and I think it is dangerous to get people's hopes up by only reporting only the positive reactions. There may be many more causulties of any treatment and they should be reported as well so that anyone trying an experimental drug or regime has the full story.
     
  6. underdog

    underdog

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    Sushi,
    Your comments are perfectly valid, you're describing what happens in practice.
    Of course treatments are synergistic but if you can list the one or two that were the main improvers. You can mention the others in the comments column.
    The idea is to have a simplified overview of what moves people out of illness.

    Also, as you say, treatments are relevant in relation to specific issues arisen from testing.
    The spread is a compromise for the sake of simplicity. It could be more comprehensive and complex but I don't have the energy to do that.
    But it can be helpful if we for example see only some rough patterns coming out, like at present I see quite a few B12 as a driver.

    Nielk,
    The spread asks also for an improvement in the level of activity as described on this forum (0-bedridden constantly, 1-mostly bedridden etc.) as well as for the main symptoms.

    ukxmrv,
    I see your point. I had actually thought of integrating the aspects that you mention. Also a treatment, perfectly safe may help some but do nothing for many others, and so on. However, I couldn't think how to do it without making the whole exercise too complex and draining for me.
    Then I thought that in the end it's up to everyone of us to check side effects, reactions etc and whether a certain treatment may be helpful to us or not.
    Anyhow, I think we can at least add a further column for side effects and similar.
     
    garcia likes this.
  7. underdog

    underdog

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    Triffid113,
    Thanks for filling in your treatments. I have taken the liberty of splitting the actual treatments from your comments and moved the comments to that column.
    I'd appreciate if you can also specify the degree of improvement in terms of the PR activity ratings for each so to give an idea to others on how you moved from 2 to your current 8 (which is quite remarkable).
     
  8. Valentijn

    Valentijn WE ARE KINA

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    Do you only want responses from people that have ME/CFS, and/or have had it in the past?

    Part of the confusion might be due to a lack of clarity on that point. Triffid113 has never had ME/CFS.
     
  9. underdog

    underdog

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    Personally I'd like it to be an exercise that is helpful to as many people here as possible.
    There's a box that asks for the CFS diagnosis and another for other relevant diagnosis. I was assuming that those who don't have CFS would input something to make that clear. If someone doesn't have CFS they could write in the CFS box something like "not applicable" etc.
     
  10. Hanna

    Hanna Senior Member

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    Well done Underdog!
     
  11. triffid113

    triffid113 Day of the Square Peg

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    I dont want to excite you - I was not at a 2 for very long. I developed panic-forever instead of panic 1 day/month after hysterectomy, and could not function almost at all with panic. It is not ME, it is panic. I could not go anywhere because the outside world was too big and made me dizzy...I had to look at the ground to even try to do anything...not (So I could not drive). straight ahead. I could try to do stuff but by the time I wrestled with my panic, most of the day would be pissed away. This could not go on since I have to support myself. But I knew it had to do with hormones - my life was littered with clues, so since no doctor was helping me I had my Dad drive me to a local health food store and bought DHEA. I knew very little about it at the time but I researched the hell out of it afterward. It worked almost immediately. U see how misleading this can be? But really w/o this is very misleading too. I mean because I fix my problems pretty quick people think I do not have them. Ok, I had hyperthyroid VERY BAD (thyroid storm bad) for 9 months and I had high blood pressure (Stage 3 bad) for 6 months both before I solved them. I could function with those but awful hard - the thyroid problem caused an angry-loud-hornet's nest buzzing in my head and it was very, very hard to concentrate with that to try to solve it and to try to function. The high blood pressure felt like I could sneeze and stroke out (I certainly felt it). I am, like my family before me, ALWAYS fighting some real dire thing that could kill me, always running just to stay in place, because I always solve them. And then another one comes along. That is life with 18 genetic defects out of 30. I shudder to think how many other genetic defects I have that have not been mapped.
     
  12. triffid113

    triffid113 Day of the Square Peg

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    How can we do that exactly? Isn't CFS like epilepsy - it is diagnosed by default of not finding anything else? How do you get a definitive diagnosis? In my family everything is blamed on diabetes. But I know lots of diabetics who do not have these issues. I do not kow of a CFS test. I think I have the genes for it and am countering them but that is why I have an energy deficit. For instance, I have thegut problems if I just stop taking Olive Leaf Extract. I make very little stomach acid, but b4 it got to be a problem I figured out that THEREFORE I need 2 take something to kill gut pathogens as HCL WOULD have, so I preemptvely took Olive Leaf Extract. When I run out, if I do not get a new supply in about 3 days, I have the same gut problems y'all have. So, how do you count that? I work VERY HARD, running ALL THE TIME just to stay in place. If you regard CFS as having a virus on top of genes (like EBV) I don't think I have that but I pre-emptively avoid that stuff by supplements also.

    So all told I have never been a 2 DUE TO CFS, because I have NEVER not taken massive B vitamins (since a baby)...I am the Aspergery one, and so sickly as a kid I converted my mother to an armchair nutritionist-vitamin-pusher (who nonetheless hated sick people, and me).

    fyi, taking that COMT inhbitor remark out of the depression treatment may render it unworkable for anyone w/o COMT +/+ genetic defects which I have. I thought the object was to list treatments that work for you FOR THE PURPOSE OF HLPING OTHERS?! If you do not understand what a treatment is doing, you cannot understand how to tweak it to work for you.
     
  13. triffid113

    triffid113 Day of the Square Peg

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    Awfully definitive statement there from someone who isn't a doctor. I actually believe it runs in my family and I always thought I had it. Ok, I came here and saw how bad y'all are and know I am not that bad. But do you know how many tears I have shed for constantly being sick and constantly having to take pills and never really being able to be done with it, but always, always having to researcj my butt off to fight off the next life-threatening thing? During my entire career I worried I would not be able to go on for exhaustion alone. Because I have so MANY things wrong (as my family does) NO ONE would ever look further. So I was light-headed, short of breath, and passing-out anemic my whole life...due to real blood loss from fibroid tumors. So who would look further? But I had them out and although I stopped passing out, it did not get better. I cannot get rid of every major problem long enough for any doctor to look further. I cannot even get to listeven a portion of my majot symptoms to a doctor - they can't deal with it. If I write them down, they ignore all but the top TWO. Hmmm. As this chart specifies - no one is interested in any but the top 2. Who knows what the top 2 are? The top 20 are life treatening. I would like u to cut me some slack, friend. I wouldn't be here w/o a reason.

    Trif
     
  14. Valentijn

    Valentijn WE ARE KINA

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    It's primarily diagnosed by having the symptoms. The central symptom is post-exertional malaise, which is fairly unique to ME. If someone doesn't have that, they probably don't have typical ME.

    You can read the full criteria at http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf

    To say that your treatments help people with actual ME is making an awful lot of assumptions:
    1) That ME has a strong genetic component,
    2) that you have those genes,
    3) that ME can be prevented, and
    4) that any treatment that actually does prevent ME is also useful for treating it.

    I find 4) to be especially unlikely as pretty much everything has been tried involving hormones, vitamins, supplements, etc, in varying combinations, without curing anyone that actually has the disease.
     
    Jenny likes this.
  15. Valentijn

    Valentijn WE ARE KINA

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    It's a statement that you have made about yourself before.

    It's not a matter of degree. It's a matter of having the symptoms that define ME.

    These are unfortunate issues and I'm glad you improved somewhat. But I'm not sure why you think they are indicative of having ME.

    Based on what you've described of your symptoms, I don't think your reason for being here involves having ME, unless you are using a very poor definition of ME. In addition, in the past you have specifically denied having ME.

    I believe you genuinely want to help people with ME or any other condition, but I think you lack the understanding of ME necessary to do so. This can be seen by your frequent discussion of how wonderful exercise is, etc. Exercise makes us sick. Persisting in giving advice without understanding that ME is a recognizable disease (with distinct symptoms!)i s not helpful and may even be harmful.
     
    penny, PWCalvin and Jenny like this.
  16. taniaaust1

    taniaaust1

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    hi there :)

    CFS or ME is defined by having a certain symptom complex, most of us with this illness long term and been around it enough, can recognise others with it even before other illnesses are ruled out, simply by the symptom complex it has... it is usually quite distinct from other illnesses.

    If one still doubts their CFS/ME diagnoses AFTER everything is ruled out eg dont fit the common ME/CFS history patterns or whatever.. one can then look into other ME/CFS findings to see if they have any of them, to try to work out if the possible diagnoses is correct. Can you find any abnormalities which back up that ME/CFS is what you probably have.
    eg postive rombergs test, certain types of abnormalities which are common in ME found on EEGS etc. There is a lot of different abnormalities to be found in ME and it is likely if one starts really doing indepth testing. Some ME abnormalities will be found IF one knows what tests to be doing (unfortunately most doctors dont know to run the tests in which the abnormalities may be found).

    I myself wasnt happy in meeting things just like the Canadian consensus definition but felt this diagnoses is the correct one for me, only after finding several common ME abnormalites on my test results as well. I wasnt as familiar with this illness back then, so like wanted the ME to be proved to me, my abnormalities being ME ones ended up being enough proof for me (as a really rare disease is in my family which carries the same kind of symptoms as ME, I really wanted to be sure). But what would be the chance that I dont have ME when I carry certain ME abnormalities found on tests? In the end I had no other choice but to accept I do have this.

    Post excertional fatigue is one very important feature of ME/CFS. Post exertional fatigue is something which often hits a person 24 hrs after exercise, it often has a delayed cause and effect reaction (thou some symptoms may appear during exercise).
    (The exception in which this may not be happening in ME is when POTS is predominating as an ME symptom, to the point where a peson cant do enough activity to bring on the post exertional fatigue, due to lack of being able to be on feet)

    If you arent sure you have ME/CFS or not... look up something like the canadian consensus Document and see if you meet it after you take off the symptoms you have which cant be explained by other medical issues you have. Symptoms explained by other medical conditions shouldnt be counted (thou they still can count if you have been treated properly for the other condition and they should of gone but they are still there for reasons no doctor can explain).

    IF everything else has been ruled out by doctors and symptoms are unexplained.. you could easily work out if you have probably got ME/CFS or not by just seeing if you meet the diagnostic criteria esp if you are looking at one of the better ones which dont include as many people being misdiagnosed. Best thing if you arent sure is to see someone who specialises in ME/CFS and is really aware of this illness, to see what they say.

    ME/CFS may not just be about viruses thou the historically it did start off virally and it does start off that way for probably the majority of us.

    There thou certainly seems to be a CFS subgroup which gets the illness from chemical exposure be it from vaccine or whatever. (not sure if its the same as the ME one or not.. maybe chemicals or a virus can damage us in the same way).
     
    Valentijn likes this.
  17. taniaaust1

    taniaaust1

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    ohhh **blushing** ive no idea what Ive just done to the spreadsheet (hopefully nothing but its now jammed up on my computer so i cant see it). It wasnt fitting on my computer screen (my own computer issue).

    And as where it said two top symptoms.. I tried to change that for me as the one listed there isnt one of my top two symptoms so thought it gave a false impression of the ME in my case but the treatment you'd listed for me WAS one which has helped me the most as previously stated. (so im confused if i should of left what it said or not... as I couldnt see the whole screen either..i dont really know what the rest of the page said).

    Appoligies if Ive stuffed up anything on the page (what I ended up trying to type appeared then all over the screen of my computer..so I dont know where it ended up). I think Im going to keep my hands off of that page for a while.
    (my worst two symptoms for past few months have been been the POTS and the insomnia but they are being quite hard to treat properly, so Im still trying to successfully fully treat them with drug experimenting).

    thanks for trying to put together a spread sheet.
     
  18. triffid113

    triffid113 Day of the Square Peg

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    I have PEM. Just because I don't know a trendy name for it, means nothing. Also...my whole family, father' side has/had tremendous PEM. I also do not like the - what seems to be - peer pressure to be sicker-than-thou on this forum. In real life no one wants to hear about amny sick of ours unless we can say we had x and solved it with y. They will listen to success stories, but that is it. In the real world talking about problem x without a solution y is a social disgrace. I don't like to do it. In fact I was bitterly trained at a very young age not to do so. means nothing. I do well on Freddd's protocol which is just a more active form of my own protocol followed lifelong. Not having taken active B's but only B100 (high dose) my homocysteine started rising despite all sorts of interventions (I take 42 supplements/day - very expensive and VERY hard to avoid stomach upset/runs from it), and Freddd's protocol brought it to normal (key also was D and DHEA, as I believe it is DHEA that helps me with my CBS genetic mutations). I have seen your studies run by Rich and the people in your stsudies have the same genetic defects as me but only A THIRD of them. I also see that a lot of you may function at a 2, but a lot of u (apologies to the lot for whom this is not true becuz I get your fear and live with it myself), find that u r ok with that if u are on disability and have few responsibilities so u find life peaceful, and you snuggle in with your hubbies and bf's and you have people in your life to cuddle and share with who actually know all how broken u are and love u anyway...so both a peace from ills which I can never get as there is ALWAYS a NEW and SERIOUS one, and a peace with support form friends/family that I also have never known.

    I would trade my life for yours. I guarantee in 2 months I would take your life and be a 7 or 8 struggling, and you would be whatever u r now or worse because 18 genes r pretty hard to figure out (and Yasko doesn't know enough to do it yet).

    (I am in a bad mood 2 day, just shrug this off. I managed 2 get low iron again and want to kick myself. if you want to apply the kick, please do so privately. I really do think y'all are worse than me, but sometimes I am jealous of u all the same)

    Trif

    Hey Tania, I am not really interested in testing for CFS. There is nothing it would buy me - I am already taking the protocol and I am not going to stop for a test...because I think it would result in a pacemaker for me almost immediately. Also it is expensive to run all these tests...if I can spend about $2,000/year on testing then I am going to target tests that bring me new solutions as one has to budget - these things add up. I spend hundreds of dollars every month on supplements and hormone replacement. I can't afford to so everything. Do you know how expensive animal rescue is? I have had the care of 120+ outdoor strays in industrial areas, more than most rescue groups, ALL BY MYSELF. Thanks.

    Oh, Valentjn (or however u spell u r name), I see u really r mad about this. Well, fine. in order to prove I had anything I would have to stop my protocol developed over gruelling lifetime and I cant do that. Or I would have to cure everything but and I cant do that either. It's just an opinion. I dont know why you think that I do not have PEM because I exercise. Hah! Ok, maybe u think I am a lier? PEM is a major reason I cant get done a third or a quarter what my friends can. Of course the other reason being that I am slow even I AM doing anything. I do not know about exercise making something worse except when I am anemic (often) at which time I worry about enough oxygen to the brain and do not want to add to oxygen demand. But I do what exercise types I can. I am not a runner. I cannot do aerobic. I NEVER have enough ferritin for that, and I cant get my ferritin high enough, idk why. But I can do 3 sets of 10 with weights and over slow long time build up what I can lift/push. I can walk. Even if it makes me dizzy, I can look at my feet and walk. In fact, I usually take a book and read and walk the rail trails so I don't have to look at the distance on those light-headed days. u may be one of the ones who cant do that. But if I were you (not saying u should, just saying this is how I would manage it if it were my body), I would regard it as a phase and I would courageously, maybe stupidly, certainly stoicly, try a boatload of supplements until I found the ones to get me out of that phase, so that I could. I truly think that having a label for your ills can mak you stop looking at them as just symptoms which can be individually beat. My life is full of phases- like a high blood pressure phase (apparently normal for me w/o hormones) and a low blood pressure phase (during adrenal burnout) and whether or not I know what the names are for these, I know that blah-blah helps me to move from one phase to the next, which has its own distinct protocol and requirements. I know there is no 'proven' cure for ME/CFS, but if you do not know you have CFS but just a boatlaod of symptoms, you may find u can solve enough of these symptoms individually to improve your quality of life. Well, I have done so. Panic is not the only thing that caused a 2 ever in my life. I have been so low iron that it felt like I had cancer for a whole year I was gritting my teeth and every single move, thought, anything at all was excrusiating. No one ever told me u can't make cortisol or thyroid hormone or neurotransmitters w/o iron. No one ever helped me with low iron which I had my whole life. I u r female, doctors assume u will have low iron and they pay no attention whatsoever. They just rag o you to take more iron and never even ask how much u r taking (I was taking a WHOLE BOX EACH AND EVERY DAY!). I had to have 3 fibroid operations in my life. Tania, i dont care what u say there is no doctor going to diagnose CFS when u have that. It's just not happening. And now, I am more likely to get diagnosed autistic, another label that doesn't help anything. What is the payback getting these labels? If u r going to file disability, I can see it. I can't do that. In order to do that I would, as I said, have to get a pacemake in only days. I would be totally broken and maybe could not recover. Ok, i would have to learn a heck of a lot on how to supplement vitamins with drugs because I would be put on a lot of drugs (me with probably multiple chemical sensitivities...the drugs alone could finish me off) and I may never be able to wean off them, although I'd try. I'd have to stop running (IGURATIVE rununning - running just to stay in place), stop trying, and I think it would kill me.

    Trif
     
  19. xrunner

    xrunner Senior Member

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    updated, thanks.
     
  20. triffid113

    triffid113 Day of the Square Peg

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    I had no test either way. I deny being a 2. That is the only objective thing that can be said. I am unwilling to be a guinea pig. The only way to test is to stop my pills, my lifelong, life-giving pills. No way.

    Keep your negative peer pressure.
    Trif

    Velantjn, I will leave u with one bit of info - a clue that may help u or not - I notice that u list 'wired' as one of your worst symptoms. Well IN MY WORTHLESS EXPERIENCE, that is something *I* feel when either I do not take my DHEA or I have some chemical blocking it (like flea control products which are androgen blockers...and many other chemicals are androgen blockers so this may be the basis for chemical sensitivity). For myself it is because of my CBS genetic defects (+/+), and it is accompanied with a excusiating-to-be-touched symptom. The clue is that this is due to an adrenal problem. DHEA may fix. If due to an androgen BLOCKER, DHEA will have trouble getting through -- so it will help a short while when it is at its highest dose, but wear off quick. So it may require other things to help adrenal. For me, glandular adrenal taken as often as needed. (Basically have to stop the androgen blocker and paliate until it is gone). Other things that help adrenal are iron, rhodiola, tyrosine. Low bood sugar is also caused by this and although i do not know what organ it works on, guggul seems to help (lowers insulin) and forslean (helps cells to absorb thyroid hormone) may help (I take two supplements that contain these ingredients and don't know how few are actually needed...the whole package works for me). Ferritin can be low w/o low hemoglobin (mine always is post hysterectomy). And if that all does not work, STILL the clue is for me it is an adrenal issue and u should see if other adrenal solutions could help u because not everyone is deficient in the same adrenal nutrients.

    I would like to help u. I do believe I would improve if I were u. I have been at this my whole life buying my own vitamins since I was 12 reading and observing and trying agaian and again. Rich improves people - his studies with his protocol show improvement. r u going to get mad because his studies show this for the average CFS person, even if the actual path to get better may be a little different for any particular individual/you? I, instead, think when I see a stuidy that proves something works, but that does not work for me, that I have an additional nutrient or 2 missing and just keep on looking for what else, what else has to be added on to work. I may as well have jumped off a short pier at 3 years old if I believed any different.

    Trif

    P.S. I don't communicate very well especially about illness. I ignore so many things I have ignored my whole life, however awful, because I have been trained to know people will just make fun of me. I used to be on the other board and just about fall out of my chair as I would read about things like people who 'felt like insects were crawling all over their body' and I'd be like OMG you mean one other person in the world feels like that? Like symptom 2000 down my list I would never even think of putting o a list it is buried so deep in my training that 'it is all in my head'.

    It appears i am actually 2 sick 4 this conference. u folks r just too condemning and judgemental and assumption-making. Well good luck
     

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