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Plea to colleagues by doctor felled by ME

Discussion in 'General ME/CFS News' started by Countrygirl, Aug 10, 2017.

  1. bombsh3ll

    bombsh3ll Senior Member

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    I didn't mean to cause anyone any offense in stating that a subset of patients presenting with fatigue alone will respond to antidepressants and exercise, but in my career I have seen many patients with depression, which is also a real illness and can have fatigue as a symptom, that have improved greatly with these treatments (who have returned and confirmed this, not just disappeared).

    Of course many with fatigue will have other underlying physical illnesses, whether currently diagnosable or not, but this is not the group I am talking about.

    I think part of the persistence of the belief in antidepressants and exercise as a blanket treatment for conditions featuring fatigue including ME, is due to the fact that SOME fatigued patients do benefit. If these measures had been trialled and helped NOBODY, this belief would not have arisen. The problem lies in correct identification and selection of patients.

    I also agree that physical symptoms even in the absence of any currently identifiable pathology should not be assumed to be psychogenic in origin, and I held this belief even before I became ill myself, having seen the very wide range of strange things the human body can do. Medical science still does have a long way to go.
     
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  2. PhoenixDown

    PhoenixDown Senior Member

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    With a broad enough criteria it becomes more common. Many doctors think ME is just chronic fatigue.

    I think it's sad that doctors have to get ME before they believe in it. Even Charles Shepard didn't believe it until he got it.
     
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  3. Manganus

    Manganus Senior Member

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    What you might fail to recognise is the the time scope.
    The writer states he has been practising medicine for 30 years. That means that he went to medical school in the late 1970s.

    Long before any distinction between "light CFS" and "heavy ME" was possible to make based on objective criterias.
     
    MEMum likes this.
  4. Mithriel

    Mithriel Senior Member

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    When I was growing up, it was taken for granted that flu often left people feeling tired and depressed for weeks or months. Other infections could also take a while to completely resolve and this became known as Post viral Syndrome. In the 70's my husband took a bad flu but was forced to return to work within a week. He became very thin and pale, so tired he collapsed into bed when he got home from work and eventually they had to let him take time off.
    It took about 9 months before he started to pick up. We were glad as we knew people who took 2 or 3 years to recover.

    In all that time he was ill, it never ONCE, occurred to us he had the same disease as my ME since I never experienced fatigue the way he did and he did not have the neurological symptoms I had.

    Then suddenly in the 80's ME became chronic fatigue syndrome and all the fatigue states were mixed together. Post Viral Syndrome ceased to exist as a separate entity. I think that many of those people who assure us that X, Y or Z "cured" their ME actually had PVS; a nasty little disease but not lifelong. Or Epstein Barr which can resolve even after a few years bedridden.

    My belief is that my aerobic respiration system was damaged on Saturday 27th July 1968 but that the consequences of it have been building all these years. If I became ill today I would want to know if I actually had ME because it can't be cured but pacing and being careful can maximise life.
    (Except for teenagers who need an accurate diagnosis even more because proper management can lead to what is effectively recovery)

    It is vital to disentangle the mess that lumping everything as CFS, or worse, chronic fatigue, has caused. It makes doctors stop at fatigue when there are lots of diseases out there that could be cured or treated.

    This isn't to dismiss people's illnesses, but it is no one's interest to think they have ME when they actually have, say, Behcet's Disease which is treatable.

    Mithriel
     
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  5. Woolie

    Woolie Senior Member

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    Thanks for that generous reply @bombsh3ll, and no, you didn't offend anyone, I'm pretty sure of that.

    I also agree that if someone comes to you complaining of feeling very sad, with loss of pleasure in life, and perhaps some really negative views of themselves and their future, its probably good to get them out and about talking to people and doing regular activities. Or even anti-depressants if the problem seems severe enough.

    That person is presenting with primary psychological distress so its appropriate to address this with psychological interventions.

    But if a person presents primarily with somatic symptoms, like fatigue or lack of concentration, then its more tricky. Yes, self-reported fatigue/ poor concentration is a common correlate of sadness and negative feelings, and its inclusion in self-report depression scales and the like improves sensitivity to depression. But its a correlate only. The core of depression is its affective and cognitive components. No-one should be diagnosing depression based on physical complaints alone. If that's all that's there, then its not depression. (And clinicians should be awry of confirmation bias too. Even the patient reveals some current life problems and stresses when questioned, remember that all people have problems and stresses if you interrogate them carefully enough).

    Also, a symptom like fatigue is not one thing, its many, and most patients are surprisingly good at explaining what they mean by the word - whether they mean limitations imposed by their body that prevent them doing they things they really want to do, or whether they mean a lack of mental push or low motivation to do the things they used to love.

    Finally, some of the recent research on the cytokine theory of depression also confirms that the fatigue-depression link is looser than we previously believed. Some recent studies that have used anti-inflammatories to treat "treatment-resistant" depression seem to elicit rather selective improvements on self-report measures - specifically on items relating to fatigue and other somatic features. There tends to be little or no improvement on items relating to the cognitive and affective components.
    We're not so different on this then!

    I'd love to hear more about how having this disease has developed your perspectives as a doctor. Its certainly developed mine as a psychologist, and I am much more sceptical about a lot of things now.
     
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  6. Old Bones

    Old Bones Senior Member

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    I haven't challenged any of the people who have told me they have CFS. And, all those who know me (except my narcissistic sister, of course!) would say I am far too polite, and treat people with more respect than they often deserve, based on their behaviour towards me. Regardless, my original post wasn't about my opinions or judgments, but rather statements made by a doctor and psychologist, neither of which were made with any disrespect towards patients they perceived were ill for other reasons.

    But, here's an example of my issue. One person who recently told me they must have "chronic fatigue syndrome" is a cousin, and a nurse. She's older than me, and still working part-time -- six week stints of 16-hour a day shifts in a remote community with few medical resources, on-call 24-hours a day. She does this to fund her extended trips, cycling around the world. When at home, she does hot yoga and various other strenuous exercise programs. She has a wide social circle, regularly hosting up to 50 people in their home for dinner. And no, she doesn't hire a caterer.:rolleyes:

    Of course she's fatigued -- anybody would be with a lifestyle like that. In situations like this one, rather than me "scorning" others for being mild, it's more likely they are telling me indirectly what they think about ME/CFS, and my "false illness beliefs".
     
    Last edited: Aug 12, 2017
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  7. slysaint

    slysaint Senior Member

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    Fairly recently, someone I know who is slightly older than me, goes regularly to the gym, out to lunch, has dinner parties, travels quite a lot (having sold the family business, so no longer needs to work), bit of a shopaholic, suffers from verbal diarrhea, said to me
    "sometimes I think I have a bit of ME"...........I flipped, gave her chapter and verse.
    I have never seen her go so quiet.
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    I read the link above but am confused, did it actually say that the person paid $100K for Rituximab? I was able to get it covered by insurance (without being a doctor myself) and my co-pays will be around $300-$350 per infusion. I am assuming a doctor would have an even greater chance of getting insurance approval than I would b/c of the nature of the system.
     
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  9. Manganus

    Manganus Senior Member

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    The price is said to be expected to fall, they say.
    But so far, I've not seen any signs of that.
    (Might be that I've looked in the wrong direction.)

    This site says the price for Rituxan (that ought to be the same as Mabthera and Rituximab) is ~900$/100 mg.

    That means ~5000$ per dose (including glucocorticoids and such stuff), if using the same dosage as in Norway, i.e. some 35-40.000$ per patient.
    Then we have to add the cost for the involved nurse, localitites, insurances, etc, etc.
     
    Last edited: Aug 12, 2017
    MEMum likes this.
  10. Snowdrop

    Snowdrop Rebel without a biscuit

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    You only have to be on twitter or browse youtube to find lots of people with a slight case of ME who make all manner of statements that are factually incorrect. They also don't distinguish between ME and chronic fatigue using both indiscriminately.

    And I've heard (in the past when I actually saw other people) some say they thought they might have CFS cause they were tired. No doubt at least some of these were products of having been diagnosed as such. Then there are those who have Post Viral Fatigue Syndrome who recover but have been given the diagnosis of ME/cfs. What a mess.

    It has occurred to me to wonder though about those who claim cfs who are only tired if this is one pre-condition of later getting true ME. I'm not doubting that their health is as they say but it seems to only be about fatigue.
     
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  11. TiredSam

    TiredSam The wise nematode hibernates

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    I think some people just have an annoying habit of saying things like "that's a bit autistic" or "I'm being a bit OCD" or "I've got a bit of M.E." Completely trivializes serious conditions, but I don't know what to do about it. Perhaps saying something like "I feel a little cancerous this morning" might make them realise how f. offensive it is.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @Manganus I am not doubting the market value price (private pay) but am confused why it is assumed the doctor did not get Rituximab covered by insurance like I did.

    Doctors usually have connections to get treatments covered that would make the process easier and I would assume (unless it was stated otherwise and I missed it) that this was covered by insurance.
     
    MEMum likes this.
  13. Manganus

    Manganus Senior Member

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    Do we know which country?
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    I thought it said the doctor was in the U.S. but maybe I am wrong and need to re-read it. For some reason I found the story credible and it never occurred to me that it might not be real.
     
    MEMum likes this.
  15. Manganus

    Manganus Senior Member

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    This is what I read:

    I agree that it loudly signalizes the United States.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    How weird, that second part was not there when I read the link yesterday. So the doctor did not get insurance to Auth the Ritux like I assumed. This seems strange to me but I still find the story credible b/c a doctor would have a high salary in order to pay for off label treatments and then even more so, would want to keep their identity confidential.
     
    MEMum likes this.
  17. Manganus

    Manganus Senior Member

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    My position: If it's fake, then it's fairly well done!
    And, as far as I can see, of no potential danger.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    My gut instinct is that this is for real.
     
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  19. Barry53

    Barry53 Senior Member

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    Thanks for the correction @Countrygirl. No, MUS was the issue in this case I think, rather than ME.
     
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  20. Woolie

    Woolie Senior Member

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    I'm totally with you here. These people are super annoying and actually quite disrespectful. My mother (80+ years old) is always banging on about she gets so tired these days, she must have chronic fatigue syndrome too. But this never seems to affect her travel plans and social life. She is always popping off on cruises, etc. I told her straight the other day. Please don't ever say you have CFS, its disrespectful to those of us whose lives have been ruined.

    But the people going to their doctors. I think we need to assume most of those have a genuine problem.
     

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