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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Is it worth seeing an ME/CFS specialist?

Discussion in 'General ME/CFS Discussion' started by SOC, Jul 31, 2013.

  1. SOC

    SOC Moderator and Senior Member

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    It's still expensive and time-consuming to pull together the data, and write and present the paper. Most of our top docs don't have the time -- they're already overbooked with patients. Dr Lerner did a paper such as you suggest and caught a HUGE amount of flack from the patient community because his retrospective study wasn't well-designed in advance. o_O As if you can plan a retrospective study in advance. :rolleyes: I'd say such papers are not worth their efforts at this time.

    Agreed, but that's not the way medicine works. The average physician is going to use treatments recommended by the CDC or NHS or some other established authorities. Those kinds of recommendations take years, if not decades, to put in place. We have things like the ME/CFS Primer which, while not perfect IMO, gives the local physician ideas of how to try to treat many of the symptoms seen in ME/CFS. The problem is that this document, as well as the CCC and ICC definitions, are not widely accepted or endorsed by medical officialdom.

    Can't argue with that. :) Well, maybe the more income for governments... don't see how that is going to happen. But I could go for more people being helped and more specialists, certainly. I don't see how you think that is going to happen in any kind of hurry.

    Yep, that would be great. And how are you going to make that happen? What do you propose that is not already being done by ME/CFS advocates?

    In the meantime, I'm getting the best treatment I can manage for my daughter and myself. I'm going to share as much information here as I can to help other patients not make the mistakes I did. That's the reality of treatment at this time. It should be better. It isn't. But we're working on it. We're making progress.
    vli and Valentijn like this.
  2. Tito

    Tito Senior Member

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    I did not know that but sadly I am not surprised. Some patients organisations are just dreadful.

    Indeed. But there are exceptions to this. When the first retroviral medications were found for Aids, they managed to find a solution so that people could still try these new drugs before a full assessment of their risks was made. There was a real political wish to amend the rules considering the state of urgency. Unfortunately for ME, there is no perception of urgency :(

    If new guidelines are issued (and this is a political decision), then we could already avoid mis-diagnoses (for example, coeliac disease that can be fully treated; lyme disease; etc.) and perhaps help say just 25% of real Me patients with well-known drugs. That would be a total of 50% of the current so-called ME patients that could work part-time, pay tax and spend their money. That is quite a substantial financial incentive to make the political decision to amend the guidelines.

    I do not know for the US, but in the UK, the patients organisations were behind Wessely for years. There is that sort of deference towards Gods, sorry, Doctors in the UK and we pay the price for this. I think the Aids advocates in the US were much more clever. They turned their fight into a political one. Essentially they said: we, as human beings, are entitled to a place in the society. Denying us treatment means you are discriminating against us because you don't like gays. Politicians's reply was to say: we'll fund research/treatment as evidence we do not discriminate against you. It worked because it happened in the US. This would never have worked in the UK (people are too scared to rock the boat). The problem with ME is that it does not affect a single social group and we lack that common ground the Aids patients had in the 80's. They were also in every state agency, every corporation, and could work (and therefore be influential) up to the last stage of the illness. This is what we do not have. My personal feeling is that limiting the debate to a medical one will not work (well, not quickly). We need to make the debate bigger, more visible, more unescapable for the politicians (when I say politicians, I mean Gerrada and others).
  3. SOC

    SOC Moderator and Senior Member

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    Sad, but oh so true. Things would move light years more quickly if we could get people and governments to understand how serious this problem is.
    Ah, I see your point now. :) Yes, with proper treatment we could move many people off disability payments and into tax-paying jobs. This is very much a political issue and Wessely and Reeves were playing politics against us for so long (and Wessely still is), that we have a major uphill battle to fight. :mad:
    I couldn't agree with you more. Our problems are as much political as they are medical.
  4. Misfit Toy

    Misfit Toy Senior Member

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    Hi xchocoholic! Thank you for the info. I just went to a Celiac meeting yesterday, actually a barbecue and I learned a lot. BUT, I didn't learn that it could take that long to heal or get better, so thank you. I seriously have only been off of gluten for a few days. I was eating a bread that was made of millet and flax from Sam's Bakery and found on the packaging, has traces of gluten and wheat in it. Well, what do you know! I had no idea. I suppose this will be a long road. I am also Casein intolerant, lactose intolerant and can NOT have milk, AT ALL. Milk is even more bothersome for me.

    I am getting so many mixed messages. So many books say that the stool test is not to be relied on, the gold standard is a biopsy. But, this woman I met yesterday said that that isn't even true. That so many people come back with a biopsy that is fine and yet their blood work is not and they have low igA, like me.

    This will be a long road for me and I am also supposed to do the IVIG because my IgG is pretty low, too. Basically, I am held together by tape right now.

    Thanks for the info. It's good to see another CFIDS member with Celiac. I am not alone. Most at the meeting were pretty fine other than Celiac, but one woman said her sister is really sick from it and has other problems, too.
    Valentijn likes this.
  5. Stretched

    Stretched

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    True, Firestormm, for ALL businesses. However, this shouldn't be an issue. In Capitalism the purpose of a business is set by definition: a corporate entity, a partnership or a proprietorship engaged in activities to make a profit. No problem here!

    I go back to Misfit Toy's complaints, above - totally legitimate IMO. Further, I'm not far removed from her plight of specialist versus young doctor wiling to work with an informed patient. My solution, maybe a little flawed, is THEN qualifying the candidates by registered letter. Most
    won't reply without phone followup. Make appointments, interview a few then choose one who appears most agreeable. If s/he wavers on your needs move on... .

    The bigger beef with medicine (and law) is that as 'professionals' (the most misappropriated word in the US today) they hold themselves out to the public for a higher purpose(s). Rather than customers they have patients and clients. Firstly, they take oaths to do no harm in dealings with their subjects, and second, each group is charged to act in their subjects' sacred trust and best interests. Oh boy!

    There are tomes of written and video Journalism (annotated), beyond personal experience and opinion which present a very different picture of the antiseptic illusions of these professions which are taught to children and the naive who will listen. Here's an appropriate quote from a thread in this very Forum:

    Anatomy of Influence, Literature As a Way of Life', by Harold Bloom (a professor at Yale):
    "Maybe it's not surprising, then, that the vast variety of symptoms that afflict mankind puzzle even the most erudite doctor. Over 50 % of the patients who troop into medical offices are sent home with the assurance that there's nothing really wrong. Even "well understood" illnesses are far less controllable by medical techniques than physicians are willing to admit. However,the medical profession deals with this by hiding its ignorance... What doctors are selling then, is not necessarily the ability to cure us, but the illusion of control. While medical practitioners make their living from the human hunger for control, they themselves are often frequently victims of that hunger... Research suggests that people tend to block out what they can't control and focus on what they can. The medical profession's eyes are frequently blinded by this phenomenon. "

    With few exceptions, it has been written that each of these professions represent the best interests of its membership in a conspiracy against the laity. Looking at it in a macro perspective Medical schools limit the number of doctors per capita. This keeps demand up, supply limited, and fees high. A more micro focus might concern us all about what to do with doctors who don't take Medicare (for which society pays); or worse, what should be done about doctors who will not treat patients with ME/CFS. Personally, I went through three of those in a row. IMO, they ought to have their licenses pulled! Hippocratic Oath… or hypocritical? Write
    your congressional representatives and each State's Secretaries of Health.

    Lawyers IMO (and that of most of the experienced public) are worse, oh so much worse, and they are under every rock at every corner, even handing out cards at accident scenes.

    As a reference from the Bench of the Supreme Court:

    " Chief Justice Burger Proposes First Steps Toward Certification of Trial Advocacy Specialist,
    American Bar Association, 1974:

    ... from one-third to one-half of of the lawyers who appear in serious cases are not really qualified to render fully adequate representation." - Warren E. Burger, U.S. Supreme Court

    That was prior to the Vietnam War, an era when legions of anxious youth enrolled in Law School to avoid conscription. Witness the proliferation of lawyers now - everywhere! Can you imagine what the above percentage of incompetents is today? (I have seen my fair share.)

    Publicly, lawyers squeal about 'Ethics' and sacred trust! Ha, if that were defined by their actions it would mean 'any activity wherein a lawyer participates is justifiable insofar as it brings a sharing of a bounty with those lawyers involved; and the client is responsible for any shortage deemed appropriate!' Not to mention that most would be 190 years old if their duplicitous time/billing sheets were audited.

    I rest my case here. I'll withhold personal experiences in the interest of brevity, albeit somewhat,-)
  6. Misfit Toy

    Misfit Toy Senior Member

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    And, do the 50% that get better stay better? And are they male or female? I know lots of men who get better. Women, that's shaky. I have gotten better over the years, only to go back in the rabbit hole. It doesn't always last. I am on this shot (the amino peptide shot) When I first got it, it was like life had been put back into me. I could work, drink, (never could tolerate alcohol) go out, have fun....Now, it's not working.

    The candida treatment, same thing. I had to have antibiotics to kill bacteria in my gut and then diflucan. I was ready to go. I got a part time job- I was feeling better, I put on weight, I felt clearer and then having my amalgams out (recommended by Cheney, put me under the floor) Back in the day, BTW, Cheney was THE DUDE. He was the guy to see. I saw him in early 2001. We were studying his work like we were going to take an exam and needed all the knowledge we could get. Hopefully we would get better, therefore passing the test.

    I do agree that in the early days of being sick, that's the best time to try and get better. I got sick too long ago when no one knew anything. Back when it was CEBV. Not CFS or ME. Maybe it was ME. I look back though and when I got sick, I liken it to having a nuclear bomb go off in my body. The damage was done. The epstein barr virus just about wiped me out. I slept constantly and then didn't sleep at all. My periods stopped. My blood work was off the charts a mess. the infection affecting the glands and hormones. Interesting. Even then; back in 1989...there really wasn't anything they could do. And, I don't think they would know what to do now either. I was so sick. My world as I knew it, had been blown up. Gone. It was a true metamorphosis. From a butterfly into a caterpillar. But, the butterfly is still inside...and the glass is half full. ;)
  7. Tito

    Tito Senior Member

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    This is a question for Sushi. She may know more about the characteristics of these patients.
  8. Valentijn

    Valentijn Activity Level: 3

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    Some lawyers may do so, but others are fighting for peoples' rights. What's so horrible about civil rights' lawyers that help their clients ensure that they can enjoy the rights which they are entitled to? How about prosecutors, who build cases against violent criminals to keep the public safe? How about public defenders, who make sure their clients aren't tortured to get confessions?

    Painting doctors with the same broad brush is just as bad. A great many do a lot of good work. Even with ME/CFS patients they're probably trying their best most of the time, but hampered by misleading research and horrible advice and bad governmental policies. Yes, I've had some doctors who I'd love to see come down with a nice case of ME/CFS, but I've also had doctors who have been very helpful, and others who try their best even though they don't really have the resources or authority to help me.
    taniaaust1, Sushi, SOC and 1 other person like this.
  9. Sherezade

    Sherezade Guest

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    Dont get me started on doctors! I've been in 30 different ones during one year and half, i've gotten the "it's-all-in-your-head" speech 28 times, one diagnosed me with fibromialgya and last, my psychiatrist, who believe me and she is trying to help me, but of course, there's not much she can do. At least that's what she says. Anyway, i don't want to put ALL doctors in the same basket, but it's really hard for me to talk good things of modern medicine, since i've lived the last year and a half a real hell.

    But i like this thread because i'm thinking of going to De Merlier office, since i'm staying in Uk for six months, and it's easier from here than from my country. I can move easily, maybe take a train and spend some days in Belgium. I can manage to get the money (i dont have much, but my health is my priority). What i dont want is to spend this money in this visit to De Merlier and then realize that he's trying to sell me some expensive treatment that i can't afford. That would be very frustrating.

    But at the same time, it would be a nice change to find a doctor that understand me and don't call me "hypochondriac" in my face. (Been there, done that, 28 times)

    What do you guys think i should do?
    ukxmrv and Stretched like this.
  10. SOC

    SOC Moderator and Senior Member

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    Well it's probably quite clear what my suggestion will be. :D If I were in your position, I'd go see KDM. He's not going to give you all that hypochondria crap. He understands the illness. As for cost, that I don't know. The tests we need to figure out the right treatments are always expensive, so I suppose they will be if you see KDM. That's not the doctor's fault, though. You'll have to find out from some of his patients if his treatment is inordinately expensive. I haven't heard that it is (so far).
  11. Stretched

    Stretched

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    Please revisit my post on this. Note the qualifier '...with few exceptions...'.

    Perhaps it is the private sector lawyers who are most outrageous... . You would have to check with the former Supreme Court Justice (of the United States) (presumably by seance) who publicly declared that 30%-50% of lawyers were incompetent. He saw lawyers plead their cases on a daily basis. Maybe he meant the private sector as well. So, if this be the case, then by default 50% are competent.

    As for Painting doctors with the same broad brush check some of the other threads in this Forum - and a few of the posts in this thread. It quickly becomes pretty obvious that there is a large contingent of unhappy campers when it comes to doctors.

    Further, it's widely known (and published) that MOST cures, even through a doctor's office occur on their own with the doctor having no idea of how the turnaround came about...and that the malaise likely would have gone away irrespective of the doctor's contributions... .
  12. taniaaust1

    taniaaust1 Senior Member

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    Talk to other of his patients so you have more of an idea of test and treatment costs recommended by him and dont end up with any nasty surprises.
    Sherezade likes this.
  13. vli

    vli

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    Isn't it staggeringly obvious that there's no sense of urgency felt with ME as there is with AIDS because we're not dropping like flies??!
    Firestormm and rosie26 like this.
  14. Sherezade

    Sherezade Guest

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    That's an excellent idea, Tania. If any of those patients are reading this, i would appreciate to pm me and give me their opinion. Sushi already did and gave me some valuable information.

    Thanks
  15. taniaaust1

    taniaaust1 Senior Member

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    Sherezade. As most who see him will miss seeing this post, I suggest to start a new thread asking "Who's seen De Merlier" (if there isnt already one saying something along those lines, if there is, I suggest to bump the thread so get more recent replies). Then you could pming those who have seen him with some questions if you want to know more.
  16. roxie60

    roxie60 Senior Member

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    having antibodies to gluten is not a definitive test for Celiac, that can only be confirmed via biopsy of SI. I have the gluten antibiodies but the Celiac blood test was negative (notorious for being negative in many cases). But they do not aprove a SI biopsy because I have been to sick. So unless your Dr did a small intestine biopsy he would not hav told you you have Celiac. at least this is what dr told me. they strongly suspect celiac and one even apologized that it has not been dx before my age, 53. I have not had probs that i know of until the last 7 yrs. getting away fr gluten has reduced joint pain.
  17. Tito

    Tito Senior Member

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    The way I understood the issue of gluten is as follows:
    If you have high anti-gliadin antibodies, it means you have gliadin (a part of gluten) in you blood. This is because of leaky gut that should normally keep (most) gluten in the intestine and not let it migrate to the blood flow. Once in the blood that gliadin can cause all sort of problems.
    If you have anti-endomysium antibodies, it means that your immune system reacts to the presence of gliadin by producing an antibody against the lining of the intestine (the vilosities). This is what is classically called 'Coeliac disease'. You can use different tests: make a biopsy of the intestine (but I think some doctors believe that vilosities can be damaged in some places and not in others, so the site of the biopsy could be an issue) or detect via a blood test if anti-endomysium antobodies are present. In the latter, you must eat gluten a bit before the test, because if you are on a gluten-free diet, these antibodies slowly disappear as the immune system is not going to produce antibodies for no reason.
    High anti-gliadin antibodies are often considered by doctors as a non-issue because they are not familiar with leaky-gut problems. But I think they are wrong. These antibodies are a sign that something is not working as it should. However, that does not mean that a gluten-free diet for life is the solution. It is indeed very restrictive. A more reasonable solution could be to reduce the permeability of the gut, so that gluten (and plenty of other things!) do not cross that barrier and does not make us ill.
  18. singinggem

    singinggem

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    Here's my 5 cents worth. I have had M.E. for 9 years and spent a small fortune on "specialists" who have more often than not made me worse. By far the biggest help to me has been a gluten/dairy/yeast/caffeine and sugar free diet with an hour of meditation and 2 litres of water daily and a small amount of stretching/ walking if you can manage it. I swear that this makes more difference than anything a specialist has said/done for me. And if i'd known that in the beginning then I'd be a few thousand pounds richer now.
    madietodd likes this.
  19. Sherezade

    Sherezade Guest

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    I've been for a year in a gluten/dairy/yeast/caffeine free diet. The only thing i have not been able to cut is sugar, but i'm trying. Yes, i have gotten better enough to study, but i can't work full time yet. I still don't feel "normal" since i can do activities like walking or going to gatherings but they represent an effort to me. Anyway, i do agree that diet is a huge part of recovery, but it's not all.
  20. singinggem

    singinggem

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    Yep I agree that it's not all. I'm not recovered. But what I'm saying is that the improvement that that brought was far bigger than anything any "specialist" ever did. Also I believe that sugar is a huge one, I'd really advise you trying to give it up. I worked out that a lot of my flu-like feelings happened about 12 hours after I had ingested sugar. Guaranteed if I had sugar the next day I would feel like I had caught a virus. Can't explain why or what that is but just know it always happens for me.

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