1. Guest, the 'News in Brief' for the week beginning 12th October 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

(not a recommendation) What if exercise makes you worse?

Discussion in 'General ME/CFS News' started by Sly Saint, Oct 3, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,153
    Likes Received:
    42,768
    Location:
    UK
    I was surprised to find this article posted on the ME/CFS Australia (SA) Inc site:
    http://www.sacfs.asn.au/

    Sep 18, 2018 by Ernie Schramayr Hamilton Spectator

    "
    Exercise leads to a release of “feel good” hormones that makes most people feel energized, clear headed, invigorated. ............"

    "With this in mind, imagine my surprise when a friend messaged me to tell me that trying to exercise just isn't worth it for some people because it makes them "worse." It made me stop to consider whether or not she was right. What if exercise DOES make you feel worse?"

    "One of the conditions that can bring on these feelings is called Systemic Exertional Intolerance Disease (SEID). Formerly known as Chronic Fatigue Syndrome (CFS), SEID, as defined by the Institute of Medicine, is a condition where exertion of any type (physical, cognitive or emotional) "can adversely affect patients in many organ systems and in many aspects of their lives." Because of this, standard exercise guidelines for strength and cardio training do not apply to someone attempting to get or stay fit with this disease.

    While living with SEID, just getting through the day can be a challenge. Getting started with an exercise plan takes patience and persistence. In the end, however, it can make the difference between struggling to complete activities of daily living and doing so with a reserve of energy at the end."

    "Focus on increasing exercise duration and don't get hung up on increasing intensity. Long and slow is better."

    "With the right plan in place, even someone living with a condition like SEID can realize its many benefits."

    https://www.thespec.com/living-story/8908923-what-if-exercise-makes-you-worse-/

     
  2. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,217
    Likes Received:
    15,785
    Can someone contact this quack and tell him this kind of fluff is not only poorly written but actively harmful? It sounds like a puff piece to promote his and his mate's businesses. He probably picked the subject as one likely to get a high number of clicks without knowing anything about the subject.
     
  3. Philipp

    Philipp Senior Member (Voting Rights)

    Messages:
    221
    Likes Received:
    1,581
    This is the exact opposite of my experience. High intensity short duration is borderline manageable sometimes, while anything longer duration completely wrecks me for weeks. Which makes sense as aerobic energy production seems to be what is impaired in us for whatever reason.
    It feels a bit like whoever wrote that would tell people with diabetes to eat food which has a very insulinogenic response - after all, if you can't make/respond to insulin you just have to focus on doing exactly what your body cannot cope with. The important part seems to be to just make up stuff and ignore the health condition you are writing about as thoroughly as possible to maximize the possible harm you cause.
     
  4. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Messages:
    1,915
    Likes Received:
    13,934
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    7,557
    Likes Received:
    77,530
    Does he disclose a conflict of interest? Like earning a living?
     
  6. inox

    inox Senior Member (Voting Rights)

    Messages:
    506
    Likes Received:
    4,520
    Location:
    Norway
    The original article reads like an ad - ending with:



    and his contact information, email and phone.


    There's also this gem, his 'truth witness' for the fitnessplan he presents:

    "According to Jim Beatty, personal trainer and owner of FitnWell in Philadelphia: "There is always progress to be had. If a person is getting worse from exercise, then either the stress or the recovery is incorrect. Our bodies are adaptable machines … we can choose to do something that is appropriate that will improve us." Eventually, most people can participate in strength training and endurance workouts, albeit at a pace and a level that is appropriate for them."

    https://www.thespec.com/living-story/8908923-what-if-exercise-makes-you-worse-/


    Why on earth would they post this on their own page...?
     
  7. inox

    inox Senior Member (Voting Rights)

    Messages:
    506
    Likes Received:
    4,520
    Location:
    Norway
    He should really take his own advice, from his fitness page (unsafe link?):

    https://erniesfitnessworld.com/about

     
    Last edited: Oct 3, 2018
  8. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    6,095
    Likes Received:
    40,016
    Huh?
     
  9. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    2,989
    Likes Received:
    20,367
    It seems that exercise will increase muscle mass, but for some reason, in some cases, particularly between the ears.
     
  10. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    1,911
    Likes Received:
    14,280
    Location:
    UK
    Just incase anyone wants to let them know they've published dangerous nonsense:
     
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,153
    Likes Received:
    42,768
    Location:
    UK
    There is loads of this kind of stuff on the internet; I am more concerned by the fact that it was posted on ME/CFS Australias website. What is going on with ME charities(?)

    @Simone
     
  12. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    4,909
    Likes Received:
    38,611
    Location:
    Canada
    Down is up. Gotta keep up!
     
  13. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    1,541
    Likes Received:
    10,212
    Here are the people we have to thank for the horror that is the ME/cfs Australia (SA) Inc website:

    http://sacfs.asn.au/society/management.htm

    None of these people have much of an internet presence.

    I think they may be beholden to financial conflict of Interest money. Or at least government funding.
    It really isn't a site that puts people with this illness first. Emerge Australia is much better.
     
  14. Simone

    Simone Senior Member (Voting Rights)

    Messages:
    357
    Likes Received:
    3,538
    Location:
    Australia
    Thanks for the heads up, @Sly Saint. I’ll raise it with ME/CFS Australia (SA).
     
    Last edited: Oct 5, 2018
  15. Penelope McMillan

    Penelope McMillan Established Member

    Messages:
    24
    Likes Received:
    166
    Thanks! I have asked our web person to take the article down. He has been very unwell and it may take a day or two.
     
  16. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    1,541
    Likes Received:
    10,212
    I may be mis-remembering but it feels like deja vu. There is a regular stream of iffy material going up on that site and from PR I seem to recall someone coming on the forum to let us know material complained about would come down but that the website person was presently sick. Perhaps as I said I am mis-remembering but I have that deja vu sense about it. I find it hard to understand how it is not already clear to responsible persons what material is appropriate so that inappropriate material doesn't linger mistakenly on the site while they convalesce.

    It would be good for this charity to interact with the ME community more broadly as it is a National charity. Things are changing fast (for a variety of reasons) and any support for BPS will be challenged as inappropriate. All ME charities show show there constituents that they are up to date on the science and on side with a first do no harm approach to advocacy. There needs to be real transparency from charities. Statements that are clear and unambiguous. Actions that align with words etc.

    I admit it is a 'thing' for me lately to not give a lot of wiggle room to any organisations that lay claim to their existence as advocates for people with ME. Many have up to the present been anything but. Leaving us languishing with this horrible illness even as we have used our little resources to complain and then be ignored up to now. Charities can do better.
     
  17. sea

    sea Senior Member (Voting Rights)

    Messages:
    458
    Likes Received:
    3,210
    Location:
    NSW, Australia
    @Snowdrop I’m pretty certain all of the commitee members have ME/CFS, so it is not unreasonable that illness gets in the way of getting on to something straight away. It is a sad necessity that organisations have to be manned by patients.
     
  18. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    1,541
    Likes Received:
    10,212
    Here's the thing @sea. They are quite able to upload perfectly terrible news stories in a timely fashion.

    And by now, as I mentioned there should be some sense of what is or is not appropriate so that there is no need to go to the trouble of all that effort of removing bad material. This should be especially true if what you say is true and they are also people with ME. That makes it even more baffling.

    There is by now (from the last year or two) some very excellent articles that are very good advocacy materials that can be put up on charity websites. There is no need for questionable material. There should be IMO more emphasis on all the bioresearch happening and sharing that with their membership. None of that is more difficult than doing what they are doing presently.

    These observations go beyond just this charity website as well.
     
  19. sea

    sea Senior Member (Voting Rights)

    Messages:
    458
    Likes Received:
    3,210
    Location:
    NSW, Australia
    @Snowdrop I agree completely there should be far more care taken with what is put on the website. My comment was only in relation to the length of time taken to respond to a request.
     
  20. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    1,541
    Likes Received:
    10,212
    Ah, @sea Thanks for the clarification. Your post was actually clearly just that. I get carried away.
    If only we had this level of internet scrutiny a decade ago. Than all this might not be an issue now.
     
    sea and Little Bluestem like this.

Share This Page