The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Why do I tell the truth?

Discussion in 'General ME/CFS Discussion' started by Sandman00747, Apr 14, 2016.

  1. Sandman00747

    Sandman00747 Senior Member

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    I haven't been feeling well for about a month or so. I knew something was not right with my body. I firmly believe most ME/CFS patients become much more in touch with their bodies than most healthy people do. Anyway, I went to the doctor and sure enough I have developed hypertension. So, after an EKG and a few other tests and a blood draw my doctor asks me how I am doing in general. I told the doctor that I am in a bit of an ME/CFS relapse (documented for many years on my chart) and the base of my skull is killing me along with intracranial pressure and most every joint is ablaze and my fatigue level is quite high.

    Without hesitation the doctor launches into a 15 minute talk about how depression is at the bottom of most of this and if we treat the depression I will feel much better. Of course I'm a bit depressed. I have spent 20 years of my life feeling like crap but putting on a smile MOST all of the time. I give up. From now on even if I'm bleeding out in an examination room when the doctor comes in and asks me how I'm doing I will say " just peachy doc!" I truly give up telling the truth until healthcare changes it's ways, in other words, when hell freezes over!
     
  2. Mel9

    Mel9 Senior Member

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    C
    an you change doctors ?
     
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  3. PennyIA

    PennyIA Senior Member

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    Yep!

    A few years ago I had a true medically explained illness... text book case of Pleurisy. Multiple trips to the ER and sent home time and time again to be told, it's Pleurisy, it sucks, nothing we can do, go home.

    After over a dozen useless trips to the ER when I absolutely was in agony every time? ONE doctor finally asked me how my gall bladder looked on my last scan. Huh? no one has done a scan on my gall bladder. That entire time I was having gall bladder attacks that ALSO HAPPENED TO TRIGGER Pleurisy. Funny that. Would have been totally treatable if not found a year later and only surgery as a recourse then. And go figure... not a single episode of Pleurisy post-surgery.

    But I still get to the point of thinking doctor visits are a complete waste of my time, money and energy and I have little enough of any of those.

    I'm now having a gynecological issue - and I've had ten people that I trust very well (enough to discuss such matters with) who have all said, that's not normal - you need to go to the doctor. And, me? Well, the cramping isn't THAT bad or when it is painful it doesn't last THAT long. Why? Because I absolutely dread the thought of taking my time, money and energy and getting dismissed YET AGAIN. Doesn't really matter to me if it's medically explained or not at this point...

    And I know I'm not the only one.

    How sad is it that we have been marginalized to the point of HATING to seek out diagnosis and treatment for conditions that are secondary to our primary condition that we AVOID the doctors if at all possible. I am literally going to have to be bowled over with level 9 pain or bleeding out of every orifice before I go back.

    THIS IS NOT THE WAY IT'S SUPPOSED TO WORK.

    We shouldn't feel guilty for trying to find out if there's something wrong and treatable to improve our quality of life.

    Sorry for the rant... but on top of you feeling like you have to lie to the doctor when you do go in (me too)... this all just REALLY STINKS.

    Edited to add... no... Guilty is the wrong word. I wouldn't feel guilty if I went in. I think what I'm trying to do is avoid further abuse at the hands of a medical professional. I think it's only natural that if you feel like you've been marginalized, told to your face that you are making up symptoms, disbelieved, or informed that your depression is making you sick (and not the other way around) and handed anti-depressants REPEATEDLY despite all evidence to the contrary... that is abusive behavior intended to make you avoid repeat occurrences.
     
  4. Hope78

    Hope78

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    I guess this happened to most of us. Even though I experienced this so many times I still feel very angry about this. How could the medical profession just be so ignoring? I am far away from clinical depression. But guess what my current diagnosis is?:devil: Right! Depression & somatoform disorder. How annoying.
    PS I once was sent home from the doc with what he diagnosed as psychosomatic foot pain. Don't worry, just do some sports.
    I am used to pain for decades. So I walked with severe pain for weeks. Turnt out my foot was broken! The other doc I went to see was quite shocked.
    PPS I forgot to mentIon why I broke my foot! I really cant tolerate heat or sun. So I avoided it for a long time. My doctors knew about it. But nobody checked my vitamine d levels and at this time I did not know anything about the sunshine vitamine. Had osteoporosis with 26 years because I was severely defient in vit d. Could tell story after story about medical professionals. So sad.
     
    Last edited: Apr 14, 2016
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  5. deleder2k

    deleder2k Senior Member

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    @Sandman00747, when your doctors asks how you feel say that you feel quite happy, and that you are very positive. Say that you are in a good mood almost all the time. Start off by saying this, then you can say that you also suffer from pain, PEM, and extreme fatigue, but you won't let that break you down. Perhaps he will understand that your state of mind isn't your main problem.
     
  6. actup

    actup Senior Member

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    I don't see cfs/me specialists ( few and far between) but use a respected large clinic with connections to local teaching facilities.Thought I'd have the benefit of collaboration between MDs. I carefully plan how to present my case pre visit and will be the first to admit I feel a need to prevaricate just a little when dealing with someone I know is using a biopsychosocial model.

    I don't feel guilty first of all because my survival is at stake and secondly some of my providers have quite regularly deceived me. I had seen a primary at a previous clinic for several years when she left me in shock. I had faithfully given her abstracts and various papers to support my diagnosis and she seemed supportive. Then one day( still employed) I saw her after a severe crash ( great effort to get to clinic) and asked her to fill out forms for a short term family medical leave of absence or fmla. She hemmed and hawed and finally agreed capping it off with the parting comment " I don't want you to sit around not doing anything. At least go the gym". I told my first lie, "Sure I will" and then transferred to my current clinic, larger and more sophisticated. My primary has been great and warned me ahead that several of the specialists would refuse to see me with a cfs/me diagnosis. I called rheumatology and the physiatrist just to confirm. The allergist/immunologist did see me but literally denied I had every symptom reported. Head to toe hives(with photos) were just ecsema and so on and soon. The bias against a physiological cfs/me model is overwhelming and this is Seattle, a supposed biotech center. Good care as long as it's something that can be easily seen.
     
  7. Amaya2014

    Amaya2014 Senior Member

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    @Hope78 I was way too angry to "like" your post. That was beyond ridiculous! I'm glad you stayed vigilant and got the help you needed.

    It would be great if we had legal representation and could start hitting these people back in the only place they feel it..their pockets (and shiny Mercedes).o_O
     
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  8. Bead Dog

    Bead Dog

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    This seems to be quite a common occurrence when doctors either can't / won't try to figure out what might be causing illness. Here's what I have done when treated less than respectfully by these jerks. First I fire their sorry ass, then I hit every online venue; Google, med sites that give the opportunity for a review. I give them the lowest possible review that I can along with my comment about their less than stellar behavior, lack of service and downright nasty attitude. I also tell as many of my friends about the experience as I can. I'm doing this as a service for other consumers of medical "care", plus it makes me feel a tiny bit better.
     
  9. alex3619

    alex3619 Senior Member

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    Many of us try to minimize seeing doctors for issues related to medical ineptitude. The next doctor who says something like its depression might well wind up with a surprise ... I will probably start laughing at them. I know doctors hate that, but I doubt I can help myself.
     
  10. Valentijn

    Valentijn Senior Member

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    I agree that we shouldn't (and hopefully don't) feel guilty. But those people are shaming us. It doesn't matter that we haven't done anything wrong ... there is still a judgement saying that we are somehow lesser and somewhat morally disgusting creatures.

    I suppose the hard part is to keep the shaming external, and not feel ashamed or guilty ourselves. But that's difficult when society is the driving force behind shaming us.
     
  11. Denisedodd1980

    Denisedodd1980

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    I was just recently dx with the homo a1298c 2 copies of the gene. I just recently had a baby and went to my 6 week postpartum check up and I told her my sister that was 38 just suddenly past 2 days ago from they said a blood clot in her lung and made her have a heart attack she died in Walgreens so the dr didn't feel comfortable giving me birth control so she wanted to run a test and sure enough it came back I have this double gene mutation I was normal for the 677 one and the thrombion one my protein s was normal and my protein c was a little high. She had me take 1 asprian a day till i see the hemotoligst on the 19th. I'm scared to death I've been crying since I found out I just had my son I don't want to leave him. I've been reading online I don't understand what is my life expectancy? Will I fall out suddenly like my sister?
     
  12. Sandman00747

    Sandman00747 Senior Member

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    United States, Kansas
    That's VERY smart advice deleder2k! Thank you for supplying me with this. I will definitely try this next time. The sad part is this has been my doc for a very long time and I've never before been subjected to this. And the doc knows I'm quite in touch with my own body, as I said I think I have developed hypertension before they even took my blood pressure! So, the doctor knows I am not some loon out there bouncing off the walls! But thanks again. Your psychology tips will arm me much better next time!
     
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  13. u&iraok

    u&iraok Senior Member

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    That's exactly what I would do. People admire positive people with stiff upper lips. :rolleyes:
     
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  14. Valentijn

    Valentijn Senior Member

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    MTHFR A1298C is an extremely common variation, and doesn't have a large impact. It isn't going to kill anyone ... in fact, eating a decent amount of veggies or taking a normal multivitamin is sufficient to compensate for it.
     
  15. PennyIA

    PennyIA Senior Member

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    I agree, the most likely impact of this is that it can impact B12 deficiencies, etc... and in my history it increased the homocysteine levels. Those can raise your clotting risk by about .05% (general population doing everything right already has a 3% risk) and birth control pills raise your risk by about 5% (again in the general population). My unlucky genes is that I also have Protein C Deficiency - which raises your risk by 10-12%.

    With that said, a combination of factors do increase risks... so pregnancy, birth control, high homocysteine levels and protein deficiency caused my pulmonary embolism back in 2004. I very happily survived my clot and have spent the last 11 1/2 years without any clotting events even though I've had multiple surgeries without risk.

    Best thing I know to dio is to
     
  16. PNR2008

    PNR2008 Senior Member

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    @Denisedodd1980 I am very sorry about your sister's death. It's just horrible to happen to all concerned. Pray for your relief from suffering and worry.
     
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  17. Denisedodd1980

    Denisedodd1980

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    Thank you so much, I'm just so scared to have the same fate with this. They didn't do an autopsy so i don't even know if she had this homo a1298c as I do
     
  18. KauaiWahine

    KauaiWahine

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    Sadly, women in pain are taken less seriously, especially when it comes to gynecological pain (I have endometriosis - another "mysterious" condition that affects 1 in 10 women yet goes undiagnosed for an average of 12 years because "period pain is normal"). This poor woman had and ovarian torsion and was ignored in the ER *all day* http://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/

    I've gotten to the point where I also think "why should I make an appointment? He's just going to add it to the pile of "hmmmm - I'll have to think more on that" which he never does. Can't be solved in the 15 rushed minutes in his office? Not gonna be solved.

    Now I have a huge file of unresolved physical complaints which I'm sure makes me look like a hypochondriac.
     
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  19. joanna91

    joanna91

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    I feel like family, friends, and even doctors or medical professionals don't really understand ME/CFS today and there's lot of ignorance of the condition and misdiagnosing people with depression when they really have ME/CFS. Trust me, I tried anti-depressants, multivitamins, CBT, exercise, and they did not help at all.

    When my illness was really bad, NK Cell function of 0 LU. My immune sysyem was barely functioning. I felt like I was on my death bed. Every single day, from morning to night, felt like a severe case of the flu and like sometimes I could barely stand up to walk and it just took too much effort to talk sometimes. And these "medical professionals" just tell that i'm "just not pushing myself enough" on my underperforming at work that "i don't seem like i want to work" or that i'm lazy or have a bad attitude or whatever. But all of that was really because my ME/CFS was really that bad. The fatigue was really so severe and debilitating that it just took my whole life away from me to where most days I was spending 16-20 hours in bed. And they accuse me of just "not pushing myself enough".

    I think people, family, friends, especially doctors have a really hard time understand what we are going through and during my illness I had to constantly remind my doctors that I was not well even though they always thought "you don't look sick". I even had an endocrinologist say to me, at the peak of my illness, that I was the "healthiest person she has seen all year" even though I felt like i was on my death bed at the time.

    There's definitely too much ignorance/misunderstanding among the medical community on ME/CFS and I hope one day that will change.
     
  20. anciendaze

    anciendaze Senior Member

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    I have had a vagus nerve stimulator (VNS) implanted for 8 years. The original indication for this was research showing that "treatment-resistant depression" was sometimes helped in epilepsy patients, even when seizures continued. (I do not have epilepsy. About 30 different treatments for depression have not worked. This might indicate secondary depression with an uncorrected primary cause.) When the case nurse at the manufacturer (Cyberonics) called to check if it was appropriate to replace the battery, I described the episode in Walmart when my battery died, and EMTs found my blood pressure dangerously low. I asked about VNS implants helping dysautonomia, but heard there is no research on this. My reply did not fit in the box on the form, so the question of treatment helping "depression" returned. I admitted I tend to get depressed when I can't stand for 20 minutes without collapsing.

    Here's a case where an objectively measured abnormality in blood pressure was ignored to fit the preconceptions of doctors.
     
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