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Response to doctor who tells me the pathogenesis of ME is unknown

Discussion in 'General ME/CFS Discussion' started by anniekim, Oct 31, 2015.

  1. anniekim

    anniekim Senior Member

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    I am bedridden 24/7 with severe M.E. I paid for a private doctor to visit me at home whom has an interest in autonomic dysfunction. I have orthostatic intolerance as a part of my M.E, I suspect POTS, but am too ill for proper testing.

    In his letter to my GP, he wrote 'the pathogenesis of ME/CFS complex is unknown and a spectrum disease, ranging from pure autonomic failure through to pure psychological problems'. I feel this statement is wrong but I am not intelligent enough to refute it. Can anyone share how one responds to such statements?
     
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  2. Snow Leopard

    Snow Leopard Hibernating

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    I'm sorry that the doctor felt the need to make such a statement. Looks like pure speculation on the doctors part, but it is hard to challenge unless you personally have tested positive to show some specific abnormality.

    Do you need to respond? What consequences does this statement by the doctor have?
     
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  3. CantThink

    CantThink Senior Member

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    I am not good at responding either. My brain is zapped, bit I don't see how this 'complex', as he refers to it, can be both ends of his spectrum.

    If one has pure autnomic failure, then presumably thats the diagnosis and it is not M.E. at all. Then surely if it's purely psychological in a certain person, then it is not M.E. either, and is whatever the psychological problem actually is. Both those possibilities sound like misdiagnoses or co-morbid to M.E.-proper (so to speak). Perhaps what he meant to say is he doesn't believe on M.E., and that it is a waste basket diagnosis of misdiagnosed conditions.

    Do you have a good relationship with your GP? Does your GP believe in M.E.?
     
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  4. skipskip30

    skipskip30 Senior Member

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    Its quite a general statement he made and doesn't sound like he specifically said you had psychological problems from the quote you posted. Its rubbish and Id certainly not see him again but Im not sure if you'd really need to respond?
     
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  5. alex3619

    alex3619 Senior Member

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    Context. In the UK with the kinds of failures, errors and limitations, if you got a large cohort of patients together they would indeed range from autonomic failure to things like depression and anxiety. Most of these are misdiagnoses. In all cases of misdiagnosis the core symptom, PEM in one definition variant or another, is ignored.

    ME however has very specific pathophysiology. Here are two tests that can demonstrate that, though I don't think you can easily get either done at the UK, and one of them is not a great idea for the more severely ill. The first is natural killer cell function not numbers. The second is a two day CPET ... but only to be done by those who are fairly sure they can handle it as it involves deliberately inducing a crash, and that most likely would not be anyone with severe ME. Other useful tests include the tilt table test, a sleep study, and a quantitative EEG. All these involve travel to test facilities so might not be good for someone with severe ME. There are many additional tests but I think most will be more readily argued with, at least until we have more definitive testing.

    The problem with severe ME is that until doctors are more familiar with the testing on the less severe, and while these tests are problematic or impossible for a severe patient, there is not a lot that can be done.

    If you do have to engage with this doctor again, ask them how they would start ruling out autonomic dysfunction, or autoimmune. Put the question back to them. Make it their responsibility to figure it out. The risk with this is they might start to sink into psychobabble though.
     
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  6. msf

    msf Senior Member

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    Isn´t that a fancy way of saying ´I don´t have any idea what´s wrong with this patient, but that´s okay because no one else does either´?
     
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  7. Effi

    Effi Senior Member

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    hi @anniekim it all depends on what your GP thinks about it. The letter this 'specialist' wrote sounds like he isn't keen on taking you on as a patient. It's probably over his head, because you don't 'just' have OI or POTS. What he writes is plain wrong, but if you're not going to be his patient I wouldn't bother refuting it. Maybe make sure the letter doesn't go into your file so you can pretend it never happened?

    Doesn't take away the frustration though, which this kind of situation might have caused. :hug:
     
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  8. Sidereal

    Sidereal Senior Member

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    Pure autonomic failure is a disease in its own right and if someone had it but was diagnosed with ME/CFS it would be a misdiagnosis. As for pure psychological problems, ME/CFS case definitions exclude patients with primary psychological conditions which can cause fatigue (like major depression, eating disorders etc).
     
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  9. anniekim

    anniekim Senior Member

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    Thank you for the helpful replies. I am sorry I should have made clear I don't intend to respond to this doctor. I feel it's a waste of my very limited energy. It was more trying to gather information for if this arises again

    The GP I had for the last three years left the practice in September. My new GP came to see me at my request at the end of September. I didn't feel she accepted M.E as a diagnosis in its own right. She is interested in pots. I don't feel this is the root cause, just something that has possibly developed since my illness got worse. She couldn't understand why I didn't want to risk travel in an ambulance to a hospital for tilt table testing. Her comment was 'you are too young (I am 44) to be bedridden and living like this,don't you want to try and find what's wrong'. It grated. I have M.E, but that seems by the by.

    I heard about this private doctor and though what the heck I will see if he can identify any autonomic problems and it might make her believe I am interested in looking at autonomic problems. I realise as I can't stand I can't even do the poor man's tilt table testing,let alone tilt table, it makes things very difficult. He too would like me to go to hospital for tilt table testing. It's the continued conundrum of accessing investigations when they could make me worse long term. I don't think his letter to my GP will help in her recognising I have a discrete organic condition described as M.E in the literature. He also had to write how he strongly suspects I am deconditioned I am sure I am now but this doesn't as always explain why I became bedridden.

    I felt he didn't really know what was going on and his description of m.e/ CFS was full of assumptions. He seemed to be seeing it as an umbrella term for anything and everything (which I know how it is used in the UK). I stay away from doctors on the whole as here in the UK, I know they are still in the dark ages about M.E. His visit reminded me this is probably the sane approach until understanding increases.

    I actually did manage to try florinef a few years back but it had no benefit though no side effects. He claimed it wouldn't if always supine. This doesn't sound right?

    He had suggested to my Gp I try a beta blocker for 3 months then stop if no benefit. I feel he feels as I do that it probably will not help much, but why not try. I asked my old GP to try a beta blocker. She said the practice will not let her as not indicated. So I might get them to prescribe it now for a trial, but have low expectations
     
    Last edited: Oct 31, 2015
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  10. halcyon

    halcyon Senior Member

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    Pretty much what @Sidereal said. While the UK NICE guidelines don't specify any exclusionary conditions, every other well known ME or CFS definition lists active psychiatric diagnoses as an exclusionary condition. If you need an official source for this, see page 44 and 45 of the IOM report.
     
  11. CantThink

    CantThink Senior Member

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    I agree about root cause - I seem to have developed obvious autonomic issues about 18 or 19 years in. Certainly they seem to make things worse for me, so I think identifying and treating them is worth trying if possible.

    If you have a home blood pressure monitor, could you manage/try testing lying down and then sitting in bed (like however 'upright' that is for you). Then can you even get into a position of sitting on the edge of the bed? Obviously standing up makes a big difference, but even the other postural changes can make a difference for some.

    I take a beta blocker - I find it helpful but I also drink electrolytes in fluids, and use a perching stool etc. Compression wear might help you, such as compression socks or leggings.

    Your GP sounds somewhat clueless - as if she doesn't know how debilitating and serious M.E. itself can be. Or else that she doesn't believe M.E. is this.

    That is quite frustrating, but I suppose I would view it as: at least she's not completely hostile and play it by ear. That she knows of POTS seems positive. That she is willing to look for other causes (or more likely additional causes/co-morbid conditions) for your severe suffering seems also not negative. It is possible for something additional (rather than causative) to have been missed - e.g. thyroid, celiac, low B12... - and if there is, and it is treated then you might feel a little better.

    Like you, I am very unwilling/loathe to seek help from UK medics. I really only do so when I feel forced either by relatives or sheer desperation. It is so very stressful and makes me feel vulnerable.
     
  12. anniekim

    anniekim Senior Member

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    Thank you CantThink. I don't seem to have low blood pressure problems. (A little high when Gp checks it, normal when I do, doctors stress me out!). The private doctor did test my blood pressure from lying to sitting in bed. It went from 135/91mg, with a pulse of 86bpm to sitting up in bed, legs up of course, to 148/105mmHg and heart rate 91 Bpm. He made no comment on these readings in his letter and just said he can't diagnose pots without me standing up for 3 minutes which I can't do. Those readings don't look out of whack (just a bit high) Is a small increase in blood pressure not normal when changing positions?

    3 years ago when I could walk a free steps arouhd my flat I checked my heart beat when I went from sitting to briefly standing and it went up over 30bpm. This increase and the fact after a very short walk five years ago I suddenly went from being able to sit in a chair and walk short distances to needed to be in a reclining position, apart from the few steps I managed a few times daily until 3 years ago when I no longer could do that, suggested some kind of POTS thing going on. (Ill for 17 years). However, I don't seem to have any low blood pressure.

    I saw a private doctor 17 years ago when first ill and I was put on thyroxine. I have also taken 10mg hydrocortisone for ten years.

    I agree with you that the fact my GP is willing to look at some other things is a positive, but it's just the feeling she didn't really take the underlying diagnosis seriously. I may be wrong and not understanding her.

    I am sorry you have been ill for so long and UK medics also stress you out. I appreciate your input very much.
     
    Last edited: Oct 31, 2015
  13. CantThink

    CantThink Senior Member

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    Yeah that doesn't seem crazy reading changes. With the actual tilt, they strap you in and physically tilt you, I believe. So when you are upright (I don't think it is fully 90 degrees standing necessarily) you are still supported. Problem is, even if you could get there and do this, it would be high risk IMO as you are already very ill and some people find it makes them a lot sicker. I have not had one yet. On a poor man's one for as long as I can stand, I start sweating and feel sick etc. If I had an actual one I'd probably been worse M.E.-wise than I before it.

    What is your HR like normally? A beta blocker might not be good if your HR is not overly high and you are not moving around/posturally changing a lot.

    Do you take thyroxine still?

    Have you ever looked into LDN?
     
  14. Sidereal

    Sidereal Senior Member

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    POTS is defined by an increase in heart rate of >30 from supine to standing or heart rate of >120 when standing. Your blood pressure does not need to be low. BP can be completely normal or even high and you could still have POTS.
     
  15. Sidereal

    Sidereal Senior Member

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    What happened the last few times when you were able to stand? Which symptoms force you to lie down?
     
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  16. anniekim

    anniekim Senior Member

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    Thanks CantThink. I am still on a combo of t3 and t4. I tried LDN for a year, sadly no benefit. Yes, I fear the tilt table would be too much for me and that is why I don't want to do it

    Sidereal, thank you. Yes, I have read that pots can be diagnosed by solely a rise of 30bpm and low blood pressure is not needed, though many seem to have both. Would things like compression stockings work for OI that only involves a racing heart on standing? I don't know why but I have always thought that intervention is more for those with low blood pressure as part of their OI.

    I always find it so hard to explain the symptoms that happen if I try to be upright. Exhaustion and weakness is a big ipart of it but also my constant head pain gets worse, I feel very light headed and csnt think. I probably would sweat if I tried to remain upright. Overall though is just the overwhelming need to be flat. My whole body screams be flat.
     
    Last edited: Oct 31, 2015
  17. CantThink

    CantThink Senior Member

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    To answer your question - I believe so. POTS is the racing heart type... There is another name for the blood pressure one (might be neurally mediated hypo tension). People with POTS seem to frequently find benefit from compression wear so that the blood doesn't pool in the lower extremities or even the pelvic area (abdominal binder)... When the blood pools, the body/heart has to work extra hard to pump it back up.

    Also liquids with electrolytes to help the body retain the fluid and counteract low blood volume. I add Elete drops to cold drinks/water. http://eletewater.co.uk/

    If you did get up and stand - say holding onto the back of a chair, would you faint?
     
  18. digital dog

    digital dog Senior Member

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    This post depresses me so much. The ignorance in the medical profession is deeply worrying.
    I am so sorry that you had to endure this.
    I am coming to the opinion that it is not worth the humiliation of seeing doctors unless they have a family member with ME. Unless they have a personal experience with ME. Unless they have had it themselves!
    Doctors in the UK are useless. They have no idea what to do.
    We are left completely on our own in this mess. It is scandalous.
    I know that people will look back at our treatment of ME with horror.
    Im so sorry for this depressing post. Im so sorry for all of you in pain and suffering.
    Im just so sorry lives are destroyed by this devastating illness.
     
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  19. Sidereal

    Sidereal Senior Member

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    Compression stockings might still help regardless of BP, yes. Electrolyte drinks help some people. Your symptoms when upright do suggest orthostatic intolerance but, as you say, doing the TTT could be quite perilous to your overall condition. I mean, let say you do it and they diagnose POTS or another form of orthostatic intolerance. For many with M.E. the usual treatments for dysautonomia do not work or provide only marginal benefits. Yet getting to and from the hospital could set you back even further. So, I really don't know if obtaining this information/diagnosis would be worth the risk. Only you can be the judge of that.

    I'm very sorry to hear about your experience with this doctor.
     
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  20. CantThink

    CantThink Senior Member

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    I agree that overall it is very depressing and concerning. I met a lady GP while in another part of England a few months ago who was more clued up on M.E. and POTS. I was so surprised - pleasantly surprised. None of her family had it. She was enlightened I guess. She was a believer! Her father and sister were cardiologists. She herself had worked in several branches of medicine including psychiatry before she specialised as a GP. She gave me hope that there are nice ones out there. Their hands are somewhat tied by the NHS.

    My experience with consultants is not so great. I feel they are either in different about M.E. (preferable!) or downright hostile. The hostility is so damaging.

    I think what is most challenging is you never know who you'll get - with the NHS. That's so stressful. I have to see a GI in a week or so and I'm concerned about that. Will they be hostile, think I'm a hypochondriac etc. If I had cancer or MS or something, I wouldn't even think that!
     
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