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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Millions with autoimmune disease need better solutions

Discussion in 'Other Health News and Research' started by Kati, Apr 25, 2016.

  1. Kati

    Kati Patient in training

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    http://thedoctorweighsin.com/millions-with-autoimmune-disease-need-better-solutions/

    I ran across this article on Twitter. Many passages are worthy of mentioning ( but I suggest you to read the whole article) , here is one or 2:

    Being statistically invisible for ME is similar, for different reasons. We do not belong to a medical specialty. We do not generally occupy beds in a hospital. The cause of death is rarely due to ME, and death certificate usually do not mention ME. There are no FDA-approved treatments. in fact the Cochrane review says we should get CBT and GET. And lastly, we are the very last disease to be funded at NIH.
     
    Last edited: Apr 26, 2016
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  2. Justin30

    Justin30 Senior Member

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    Yeah just goes to show how little is being done about AI disease...they are becoming substantially more prevalent...

    4 close friends of the family all have them...some young some older...the one within 6 months lost complete use of her legs and is in wheelchair...they have not treated her now for 2 years as the Drs scrtach their heads while she gets worse it unbelievable.....

    Its a joke they fund male pattern baldness more then these cluster of diseases that ruin peoples lives.....
     
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  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Can't have industrial pollution,
    fallout still coming down from above ground H bomb tests in the 1950's and 60's,
    and excessive vaccination
    all shown to be a bad thing, you know!
    Bad for Big Business, who pay for all those lovely, honest politicians and bureaucrats....

    yes indeedy!!


    /sarcasm mode now disengaged
    ;)
     
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  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I have to say that I have a lot more sympathy for PWME than I do for the authors of this piece who do not seem to know much about autoimmunity. It is not an epidemic as far as I know. The incidence remains about the same. They bundle a variety things together, some of which are not autoimmune. And vast amounts of money go into autoimmune research and huge organisations like the American Collage of Rheumatology are built around autoimmune disease. Cancer may get more money but that seems reasonable since I am much more worried about my daughter getting breast cancer in her thirties than I am about her getting an autoimmune disease. My wife had cancer when she was 25 and I am glad that research had progressed far enough for her to still be alive today.

    Perhaps the biggest problem with the science of these illnesses is all the buzz words and half-baked sweeping statements that get splashed around by both doctors and patients. To solve these problems one needs precision. On that score this piece is pretty flabby!!
     
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  5. Justin30

    Justin30 Senior Member

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    I dont know if this is an epedemic or not. What I do know is that 2 direct family members were in as bad as shape as many of us had AI markers and symptom clusters similar to ours and waited for 3-5 years to DXed and were given incorrect DXs along the way.

    This being said there were not treated. Got worse and one was just DXed...the other not...

    I am in Canada and to get into Drs can take a year or more to see a specialist...if that specialist is inexperienced you sit waiting or get the wrong DX potentially or wait more months for them to actually have a test done.

    My experience is that to get testing from these Drs is like pulling teeth.

    It took 5 months to get an EMG after an initial consult? Why to delay diagnoses and to let disease progress? Basically it seems like you have to be dieing to get anywhere.

    I dont even want to get into it but today they announced in the subur I live in, had 14 GP Drs retire another batch are about to retire in the next 4 months. They have only replaced 10. The population in the city has grown by 40,000 in ghe last year. Problem....?

    I was in hospital 2 months ago....with a problem....the ER Dr openly stated that if you people want better care I suggest you all start speaking with your MLAs we have a lack of nurses and not enough Drs to help. He then walked out of the ER Room.....

    These are just the day to day guys not specialists...

    So if you have an AI disease that is not common or they cant pinpoint it....you are running around to Drs trying to DXed which I know this to be the case...I know these people personally and have experienced it myself.

    So how do we know if these articles are false or flabby when personal experience aligns with what is said in this articles?



     
    Last edited: Apr 26, 2016
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    and likenive said my area is cancer central
    Lower life expectancy than north korea
    But its just because we're Scottish dumb boozy stupid animals, as we are portrayed.....

    Got.nothing to do with 200 years of metal and cement works and then munitions and radioactives, nope not a thing....according to government
    One lass has been repeatedly turned down for funding about making a documentary on this disaster
    Oh I wonder why?
     
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  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think the problem for you is probably the same as it is in the UK - an underfunded state health insurance system. People vote for low tax so we have cheap systems that are under-resourced. I don't think it is any different for autoimmunity or cancer to be honest. I only got my prostate cancer diagnosed because I told the GP who wanted to do nothing that he was going to do something because I was a professor of medicine. My neighbour didn't get his kidney cancer diagnosed and is dead. Our system is the most underfunded in Europe and we have some of the worst survival figures. People just have to realise they need to pay for healthcare I think.

    But the article comes from the US where doctors are falling over people to sell them appointments and treatments, even if they don't do much, as far as I can see. Part of the problem may be that chronic disease is not that good business - the patients cannot afford to go on paying but they go on needing attention.

    When I say the article is flabby what I mean is that the authors do not know much about autoimmunity and have no facts to hand as far as I can see. I am all in favour of patient advocacy and pushing for better research and care but to have any impact it needs to be well informed.
     
    Last edited: Apr 27, 2016
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Autoimmunity is increasing: diabetes....
     
  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The biggest increase in diabetes is type 2, due to eating too much and getting insulin resistant. Type 1 does seem to be increasing as well and used to be considered autoimmune. However, the evidence for that is pretty thin. There are no persistent autoantibodies. T cell autoreactivity is also hard to pin down. I gather that it is now seriously being considered that type 1 diabetes may be a form of early onset islet cel exhaustion that like type 2 is more to do with sugar than immunity. It does not behave like any of the other true autoimmune diseases. That is what I mean by getting things precise.
     
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  10. Scarecrow

    Scarecrow Revolting Peasant

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  11. Gingergrrl

    Gingergrrl Senior Member

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    I'm sorry and I mean no disrespect by this but I have been trying literally everything that I can humanly think of to get treatment for auto-antibodies that have been discovered and yet cannot find a doctor to help me (in the US.) Meanwhile my breathing continues to deteriorate to the point that my own endocrinologist is afraid that I will soon be on a ventilator if it does not plateau. I have several friends in my situation (different symptoms but very ill) who have tried desperately to get care for chronic conditions and are being ignored or turned away. It is not all as wonderful over here as it must appear and not just for auto-immune diseases.

    ETA: Usually the doctors who are falling over themselves to sell expensive treatments are scam-artists (and there are plenty of them here as well.)
     
    Last edited: Apr 27, 2016
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  12. daisybell

    daisybell Senior Member

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    I'm sure you would think that this is coincidence, but I find it interesting that the young girl whom I caught parvovirus from back at the beginning of my health issues has since developed type 1 diabetes.. She has never been overweight, and the family eat very healthily.
     
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Yes, that is what I implied: you shortened my comment! I was definitely not suggesting it was wonderful in the US - just that the problems are different.
    'But the article comes from the US where doctors are falling over people to sell them appointments and treatments, even if they don't do much, as far as I can see. Part of the problem may be that chronic disease is not that good business - the patients cannot afford to go on paying but they go on needing attention.'

    The real problem with less common autoimmune diseases is that it is very hard to work out how the actually come about. The advantage of rituximab is that as long as there are autoantibodies at least there is a chance it will be useful even if you do not understand the detail. But that turns out not to always be the case because of complicated issues with plasma cells. So there is a need for doctors to understand these diseases in the way that a computer programmer might understand a very complex programme or a mining engineer might understand a complicated geology problem. Unfortunately doctors have traditionally been trained not to bother too much with detail like immunology - just hand out pills. That needs to change. It has changed to a large extent for cancer but not for immune diseases, I agree.

    But the solution to the problem is not to lump all immune diseases together and write pieces about epidemics that do not exist. It is to be as precise as the computer programmer or geologist. Doctors need to be challenged on their woolly thinking and that is one of the things I am impressed that PR is good at. We need to point out not just the psychobabble but the immunobabble and the metabolobabble and other babbles. And it also has to be recognised that many of these diseases are still just too difficult to understand what to do about. Vast amounts of research goes into autoimmunity but there are questions we still have no real answer to.
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I guess her type 1 diabetes might be a result of viral infection leading to islet cell wipe out - but that does not point to autoimmunity. Autoimmunity by and large has a random onset unrelated to infection.
     
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  15. erin

    erin Senior Member

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    I have not come across an autoimmune disease department in any hospital. If you have an autoimmune disease how do you get it diagnosed?
    Is it not possible to have an autoimmune disease department in a hospital? I feel this could be the first step in solving the problem of m.e. Also diagnosing MS, RA etc earlier. It takes far too long to diagnose autoimmune disease at the moment.
     
  16. daisybell

    daisybell Senior Member

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    Sorry if you've answered this elsewhere, but if autoimmunity is truly random, why is it that people often seem to get more than one autoimmune disease? For example, I have CREST and Graves' disease as well as ME.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    Am sorry I shortened your other quote and was just replying to that one part b/c I have had so many friends here receive poor or zero care and there is an illusion that you will be treated and cured in the US and it is false. This is not directed at you in any way and you have tried to help me with this which I greatly appreciate.

    One of my best friends died of lung cancer in 2005 b/c she had Kaiser who turned her away after multiple trips to the ER and then a PCP telling her she was fine. By the time they found it, it was too late and she died. My grandparents and uncles received horrible care b/c they were poor and one died at age 46. My stories are endless and include the present day but you get the point.

    I am just reaching a complete dead-end after three years of my breathing and lung weakness deteriorating and thought I had found a doctor willing to take a risk to treat me but it turned out that he will not. I have five auto-antibodies now (counting the two for hashimoto's) but the most serious being the calcium channelopathy. Treatments were proposed from immunosuppressants, IVIG, plasmapheresis yet no doctor will prescribe them for me and I cannot prescribe them for myself.

    If you have anything resembling ME/CFS, dysautonomia, autoimmune disease of a rarer type, and I could go on and on, you are usually out of luck, even in the U.S. I wish this was not the case but it has been my experience and I have spent three years trying to find answers and am the sickest that I have ever been.

    ETA: Sorry I got off-topic and didn't respond to what I just quoted. I am confused how auto-immunity is not related to infection? Prior to having mono/EBV and another infection, I did not have hashimoto's or any autoimmune condition and now I have several. Even the doctors who will not take a risk to treat me believe that my dysautonomia and auto-antibodies were virally mediated/caused. Is this not true?
     
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  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Have you noticed the increasing items on BBC over past few years about encouraging folk to eat less?
    The truth if this as usual is complex, but part of it is not benign
    It's a push to get peons used to food rationing
    It's coming, just watch.

    Some of the Elite know climate change and other issues are going to hammer food production and distribution
    Rather than fix these issues, which they have largely caused, they are using issues like diabetes to propagandize accepting eating less....for us, not them.
     
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  19. AndyPandy

    AndyPandy Making the most of it

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    I am a skinny type 2. Not all type 2 diabetics are overweight overeaters.
     
  20. Rvanson

    Rvanson Senior Member

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    I'll give you two personal stories of the incompetence of Kaiser Permenente. Hell, its a criminal institution, IMO.

    #1 I had "bites" on my arms, legs and other places. PCP supposedly was adept at solving skin problems, but he couldn't figure it out. I actually got sent to a dermatologist, who told me they were mosquito bites. I was a boy scout and I knew these were not those. Read and looked up all the skin problems, and found out they were BEDBUG bites!! Had to gas the critters. No more problems with "mosquitoes". Don't know how they got there as I live alone, like most
    PWCFS/ME.

    Story # Nov 2014 my left ear was ringing, I was dizzy and my ear hurt. I knew it was an infection. Weekend so I go to the ER and wait. Doctor (MD) cant find anything wrong, sends me on my merry. I go to a non-Kaiser ER in my hometown, and Physicians Assistant (PA), not MD Dx'es an ear infection, writes Rx for Amoxicillin and my ear problem goes away. Bill is $500 dollars, so I send it to Kaiser. Didn't ever hear back from those clowns. Dumping Kaiser next chance I get.
     
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