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POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

Discussion in 'Latest ME/CFS Research' started by Firestormm, Jun 16, 2014.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    Some extracts from the paper:
    It isn't alluded to explicitly but such a method of defining CFS means the comparisons between and CFS may not be true overall i.e. if people with CFS and POTS were included, the overall averages for CFS could be different.

    Exact percentage is 21% (see Table 1).
    Note: this is the percentage previously diagnosed with CFS. The actual percentage who could have CFS is higher (see later quote)
     
    Last edited: Jun 17, 2014
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  2. Tom Kindlon

    Tom Kindlon Senior Member

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    Table 2 makes up a significant part of the paper:
    However, there is a (quite big, in my opinion) problem as:
    This is the problem with paper research - some, perhaps quite a lot, of those who are described as POTS but not CFS may have actually been POTS + CFS (i.e. 43% if this figure translated perfectly to a CFS diagnosis).
     
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  3. Tom Kindlon

    Tom Kindlon Senior Member

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    The POTS and CFS were more impaired in some ways and less impaired/similar in other ways in comparison to the POTS but no CFS (this is based on whether CFS had previously been diagnosed)
     
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  4. Kate_UK

    Kate_UK Senior Member

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  5. Wildcat

    Wildcat Senior Member

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    .


    ThisTelegraph article is even worse - why can't even one journalist grasp that the WHO Neurological classification was 1969!? And where did the name "shirker syndrome" appear - I've never heard of it before.
    .
    "People with ME have famously received rather short shrift. Back in the 1970s, psychiatrists labelled cases a “mass hysteria”. It wasn’t until 1993 that it was finally accepted as a real condition, but even then, people with the disorder had to struggle to convince their doctors, friends and employers they weren't simply imagining the whole thing. In an effort to make people take it seriously, the term “chronic fatigue syndrome” (too vague) was changed to “myalgic encephalopathy” – but “yuppie flu” and “shirker syndrome” remained popular alternatives..."


    For goodness sake - the name Myalgic Encephalomyelitis was changed to Chronic Fatigue Syndrome.

    Thank everyone who Commented yesterday. TBH I think we are going backwards... the media just won't give up - I'd rather have no article than the relentless onslaught of innaccuracy and rubbish.

    Very demoralising - and so many of the comments are awful as usual.

    Spiteful people think we should be kicked up the arse.

    .
     
  6. Valentijn

    Valentijn Activity Level: 3

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    I thought only one of the articles was particularly horrible. And I think it's always good when we can make comments and push a few core points in response to the turds. The turds don't change their thinking of course, but someone else might find short and focused responses to be persuasive.
     
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  7. Bob

    Bob

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  8. Sasha

    Sasha Fine, thank you

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    I posted a comment correcting that. Actually, I thought overall it was a good article - sympathetic to us and attempting to address the psychology of those who fail to understand and sympathise.
     
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  9. OverTheHills

    OverTheHills

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    The NHS Choices article manages to put rather a negative spin on this news so I have posted my true personal experience with beta blockers transforming my life by controlling my POTS pretty well, and encouraging other patients to press for testing. It is first comment.
     
  10. Allyson

    Allyson *****

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    Gin
    Gingergirl you need a TTT - tilt table test to test for POTS

    The news article received LOTS of very negative comments from the public about POTs on their site apparently which has upset many POTsies


    to which a friend of mine posted this comment below which she has given me full permission to cite -

    wait... so if i was dumb then i wouldn't have pots?? time to take all the marijuana's.



    (On the POTS facebook pages the consensus is that educated people are diagnosed because they are aware, can afford medical care and own laptops so can access the internet.)

    cheers all

    Ally
     
    Last edited by a moderator: Jun 18, 2014
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  11. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Allyson, I actually have not read the article yet but wanted to respond to your comment. When my tachycardia first started (in Jan 2013) it was about six months after I had mono from EBV and then had another unknown virus. Initially the tachycardia occurred exclusively in my sleep and would wake me up. My HR was often in the 170's and the cardiologist captured it multiple times while I was wearing a Zio Patch monitor. She said it was called "Inappropriate Sinus Tachycardia" b/c my heart never left sinus rhythm. She said she had seen it in other women in their 30's and 40's who had mono in the previous year. She gave me a beta blocker (initially metoprolol but then it was switched to Atenolol which I still take to this day.)

    I had periods of no tachycardia and then the whole phenomenon switched so instead of it waking me up in my sleep, it would happen when I stood up. The worst was in the morning and literally every morning when I stood up my HR would be in the 150's. The Atenolol became less effective and I was no longer able to stand in the shower and had to buy a shower chair. Even with the chair, the shower in incredibly fatiguing and I feel like I could pass out (although I never have.)

    My cardiologist said that I did not need a TTT b/c the phenomenon was captured multiple times. She felt I had low blood volume (and I also have very low blood pressure) and she suggested Florinef. She said whether it was "True Pots" or on a continuum, the Florinef could still help and so far, it is helping me. She has me taking it only M,W,F to taper up very slowly (I am very sensitive to meds) but I have been trying to reach her for two days to ask if I can now increase the dosage to every day.

    My cardiologist is not familiar with CFS although she is a kind, supportive person and very smart. @Allyson, if you or anyone else has any thoughts for me how to proceed, I would really appreciate it. And just to clarify in case you haven't seen my initial post, I have the classic CFS symptoms besides tachycardia (extreme fatigue, PEM, etc.) although at present, the cardiac symptoms are the worst.
     
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  12. Griffin

    Griffin

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    I was diagnosed with "Inappropriate Sinus Tachycardia" after 24 hour monitoring and a TTT showing that I had POTS but wasn't diagnosed. Maybe the cardiologist I saw didn't know about the term POTS, I don't know why not if so.

    I take Ivabradine for the Sinus Tachycardia which is a specific targeted drug (I think not available in the US). It works, in that as the dose rose my tachycardia reduced, but unfortunately not as far as normal. Beta Blockers made me unable to function and suicidal so I just put up with the raised heart rate since at least it is lower than it was. I take salt tablets for the low blood pressure which to be honest don't really seem to work, maybe 1 point difference is all.

    I also have lots of other ME/CFS symptoms so I don't feel misdiagnosed.

    The telegraph article immediately annoyed me, it seemed blatent mis-reporting to me without looking up any details. I hate any mis-reporting on ME/CFS so I was cross. When I read the trial details and the NHS site stuff, and that confirmed the mis-reporting I was even crosser. Why do journalists mis-report? What is the purpose? More sensational perhaps, but really is an article about ME/CFS going to attract people to buy the newspaper in such a case?
     
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  13. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Griffin I purposely decided not to read the article as I have such limited energy right now and knew that it would annoy me if had a bunch of misinformation. I have so much empathy for you as our situations with IST, POTS, and CFS sound so similar (as we were discussing in another thread.) I take the electrolyte salt tablets too and not sure if they make a difference but I figured they can't hurt especially now that I am taking Florinef daily.
     
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  14. taniaaust1

    taniaaust1 Senior Member

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    That daily mail article is horrendous.

    Since when is ME/CFS diagnosed based on mood swings?
     
  15. taniaaust1

    taniaaust1 Senior Member

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    If you check out the Canadian consensus ME/CFS definition.. in that definition (see page 8) http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf
    "6. At Least One Symptom from Two of the Following Categories:
    __ a. Autonomic Manifestations:

    orthostatic intolerance - neurally mediated hypotension



    (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; " etc

    The other two catagores are immune manifestations and neuroendocrine manifestations.
    ........

    POTS can be one of the major symptoms of ME. If they studied ones based on the Canadian consensus criteria.. I wonder what percentage of these would have POTS? esp since 25% of ME/CFS people have been found to have POTS (I didnt look at the criteria used for the ME/CFS but I suspect it wasnt the canadian one).

    This is why an average GP should not be diagnosing ME/CFS.. as most GPs would not be able to tell the difference between someone who ONLY has POTS by itself with someone who has ME/CFS. We need specialists trained in these illnesses and tilt table testing or autonomic dysfunction testing should be made a must thing for all ME/CFS people as so many of us have this issue. (what was that other study done in which it was found that over 90% of us have NMH? or Orthostatic hypotension). I think nearly every ME person probably has some autonomic dysfunction going on of some kind or another.
     
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  16. taniaaust1

    taniaaust1 Senior Member

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    The big issue is that POTS patients get so many of the ME/CFS symptoms.. eg IBS, nausea, headaches, dizziness, exhaustion etc. The two illness can be quite hard to tell apart (unless a very good ME/CFS definition such as the canadian is used). The crappy CFS definitions out there, a POTS patient would fit.
     
  17. taniaaust1

    taniaaust1 Senior Member

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    The PEM thing is tricky too as people use different meanings for what that is. eg some will say that PEM is getting unwell from exercise and this unwellness or the symptoms continue longer then it should do. I can say that my POTS can do that too!

    If I collapse with my POTS (or just have a very bad episode with it), it can take a day or two to recover and this isnt a ME crash thou its presentation does have lots of the same symptoms eg exhaustion, headache etc. I'll stay in a very bad state till I manage to boost my blood volume some. So this can look just like what some may call PEM triggered off by exercise.

    What POTS doesnt do as far as Im concerned.. is that thing where one is still okay after one stops exercising but with the crash coming in later on (the delayed after exercise thing).
     
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  18. Valentijn

    Valentijn Activity Level: 3

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    Maybe it's diagnosed based on the mood swings of the doctors or psychologists? :D
     
  19. taniaaust1

    taniaaust1 Senior Member

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    When dont the press misrepresent things o_O
     
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  20. taniaaust1

    taniaaust1 Senior Member

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    I suggest you take a couple of glasses of water before you even get up. I find it can help some quite fast, its crazy how fast water seems to get into the system eg within 15-20 mins it can start to help a bit. Then get up.
     

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