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NHS video Pilates for CFS (not a recommendation)

Discussion in 'General ME/CFS News' started by arewenearlythereyet, Oct 4, 2018.

  1. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    https://www.nhs.uk/video/Pages/ms-cfs-chronicpain-fibromyalgia.aspx

    Found this on the NHS website. I wondered whether anyone knew how this can be justified and where it came from?

    I also think there should be some lobbying as part of the NICE guideline review to raise this as an issue along with GET. In fact I would like the NHS to stop recommending any form of exercise to patients with ME/CFS full stop. I think we should call for a thorough review of all NHS online content to remove the misleading and potentially harmful.

    Be interested to hear other views though.
     
    TiredSam, andypants, Squeezy and 13 others like this.
  2. Andy

    Andy Committee Member & Outreach

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    Strongly suspect they won't move on anything until after the review is complete. By all means try but I think it will be wasted effort at the moment.
     
  3. Inara

    Inara Senior Member (Voting Rights)

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    "These are actually three different conditions, but since the symptoms are quite similar we'll put them together. I hope that's ok."

    Uh, NO?

    "If you feel you have to push yourself more, that's fine, too."

    "Here's that chair, I'm just going to show you how you will get to the floor safely, if you don't have a chair just grab one now."
    I assume if someone can "grab" (better carry) a chair that getting down to the floor is doable?

    To me it rather feels like "Pilates for Dummies". Indeed, it makes me a bit angry that they make me feel people with ME, CFS, chronic pain and FM are stupid.

    I see black for the NICE guidelines. This is what they think ME, FM and all that other stuff with similar symptoms (=MUS) is.

    Edit: I don't see why these exercises should help with pain. This is so disrespectful to me. Sorry I can't be more positive here.

    Edit2: Oh yes, there is something positive - it's pilates for a change, not yoga!
     
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  4. Hutan

    Hutan Moderator Staff Member

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    I'm exhausted just from listening to Sam for 30 minutes. (Actually I muted her after 15 minutes.)

    I like pilates a lot. And a year or so into the illness, I thought it would help me get back to my previous level of fitness. But 30-minute sessions twice a week with an instructor tailoring the exercise programme to what I could do just made me progressively worse. I know from sad experience that if I did what Sam is suggesting, I would need to be in bed for 3 days. Or more.

    Perhaps doing one or two of the recumbent moves to strengthen core muscles sometimes might be ok for some. But this video creates completely unrealistic expectations. Apparently this 30 minutes is for people who are suffering severely. And movement is quite good at relieving the pain....

    Yes, @Inara, when Sam said, with respect to MS, CFS and fibromyalgia, 'because they've got quite similar symptoms, we're going to categorise them together if that's ok?' I knew Sam and I were not going to get on.

    There's a rating facility there. And comments. I agree the video should not refer to CFS.

    Edit: I've tried leaving a one star rating twice now, and the rating just disappears.
    Second edit: I think my rating is showing now - excellent- so are others. :)
    Third edit: - that's really weird. At one point there were 4 ratings with an average of 2 stars. Now it's gone back to 1 rating with 4 stars.
     
    Last edited: Oct 4, 2018
    andypants, Squeezy, Amw66 and 14 others like this.
  5. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    My understanding is that there is some evidence that very gentle exercise helps with fibromyalgia in isolation, but I have not read any of the studies and have no idea if they are any more reliable than the evidence for exercise helping ME.

    However it does sound like this lumping together of different conditions is MUS inspired. When does such wilful ignorance become medical malpractice and criminal negligence?

    No one with health problems should be advised to diet without medical supervision, so why is exercise different, though unfortunately given current NICE guidelines medical supervision may not be helpful or even safe.

    'All things being equal' exercise is good for people, however when is the medical proffession going to accept that all things are not equal all the time and that they have a duty to be aware of the times when exercise is contraindicated.

    It is like the current obsession with mindfulness and other forms of meditation. In the classical yoga texts there are clear contra indicators for meditation, for example some mental health issues, which I have correctly or incorrectly assumed to relate to what we would now classify as psychosis. I am personally aware several examples of meditation triggering mental health issues including one example that resulted in an attempted suicide. Mindfulness may provide a useful tool, indeed I personally find it helps me deal with more severe pain, but research has been so simplistic and most people give blanket advice without any awareness of potential pitfalls.

    [added - sorry a bit of an off topic rant but it annoys me that people feel able to make gross generalisations without any warnings or caveats based on inadequate understanding of the topic.]
     
    Last edited: Oct 4, 2018
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  6. chrisb

    chrisb Senior Member (Voting Rights)

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    I think this is where many of our problems arise. I recall it being said that studies on fibromyalgia in the 1980s or early 90s appeared to show some benefits. Because we all know that ME and fibromyalgia are the same thing clearly exercise was bound to help ME.
     
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  7. Trish

    Trish Moderator Staff Member

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    I watched enough of the video to know that this is not suitable advice even for people with mild ME. I was sent by my GP to a Pilates group run by an OT at the local hospital for people with FM years ago when my ME was relatively mild. It involved less activity and more breaks for rest/relaxation than that shown on the video, but it still caused a significant setback for me and I had to stop going.

    I have just put this feedback on the website:
     
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  8. Hutan

    Hutan Moderator Staff Member

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    I've made a comment along very similar lines. It will be interesting to see how NHS replies.
     
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  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I tried to leave a rating, but it it doesn't seem to accept it. It says there was only one rating when I look and that that one rating has an average of four stars.

    It is also reporting no comments have been left and I can not find a way to leave a comment.

    (Am using Safari on an iPad)
     
  10. Trish

    Trish Moderator Staff Member

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    I rated it too. The page says one 4 star rating, but if you go in and rate it, it currently says average rating of 1 star based on 1 rating of 4 stars and 7 ratings of 1 star. Confusing.

    Edit - I left my comment as 'Feedback'. I didn't seem to be able to leave it as 'Comment'. Not sure if they are the same thing.
     
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    well if it's yoga you are after you can follow the link.....
    https://www.nhs.uk/conditions/nhs-fitness-studio/

    "Take your pick from 24 instructor-led videos in our aerobics, strength and resistance, pilates and yoga categories."

    there is even belly-dancing for beginners if you fancy it:D ( @Mij )
     
  12. Inara

    Inara Senior Member (Voting Rights)

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    I like Pilates, too. (In contrast to Yoga it's much less strenuous and painful.)

    If I could do 30mins exercise sessions, I would choose something else - something more effective.

    I have lower back pain, for instance. There are some stretching exercises that help with tenseness. It's not exhausting, but very helpful.

    It's not the Pilates session itself - although I think there are much better ones, even for absolute beginners - it's the context. Why should this session decrease pain? What can a person with ME expect from this session? Strengthening?! Flexibility?! Improvement in fitness?!

    For me, this video shows that the people behind it have understood nothing about ME, CFS, pain and FM.

    But maybe that's the motivation behind it?

    "Research shows that physical activity can also boost self-esteem, mood, sleep quality and energy."
    (From the link from below.)

    Noooo! :)

    These are sessions for everyone, right?
    I will go through those videos. Maybe it's only the ME session that's so bad.
     
  13. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Well I’m impressed...I posted this morning and look what happens :)

    I could only stomach 10 minutes of the video this morning, apart from the irresponsible content, the noise and “energy level” just ignores the fact that people have difficulties in this area. I will try and watch a bit more before leaving a comment. I agree with the patronising tone ....yeah thanks lady back to your day job as a dinner lady for primary school children...not interested!

    Interestingly when you go onto the NHS website and you search keyword ‘CFS’ , this video is 4th ranked. And look ....MUS and mindfulness as well ...what a smorgasbord of irresponsible misleading crap. Even when you click on the second ranked ‘helpful’ page you get more misleading information. But I’ve said this already. I’m going to do a rewrite of this on a separate thread for us to agree/amend I think.

    C55BF0D1-F9FD-4CF2-9892-EEC79989AD11.png

    https://www.nhs.uk/search/?q=CFS
     
  14. Ravn

    Ravn Senior Member (Voting Rights)

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    This still happening except that when I added my 1 star - for lack of a zero star rating! - average rating of 1 star based on 1 rating of 4 stars and 21 ratings of 1 star. So it looks like people are trying to down vote this but it just keeps going back to the single 4 star rating. Could it be that that one was 'planted' by the NHS and therefore is the only one that keeps showing:confused:;)?
     
  15. Lucibee

    Lucibee Senior Member (Voting Rights)

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  16. Hutan

    Hutan Moderator Staff Member

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    Here's the reply I received:

    Dear xxx,
    Thanks for your email concerning the suitability of the Pilates video for people with ME/CFS.

    We constantly review our video content for clinical accuracy and therefore will take on board your comments and discuss with our editorial and clinical team.

    This may mean we remove or replace the video over time.

    Please feel free to contact us again if you have any other concerns or comments.

    Kindest regards,
    NHS.UK Video team
    I read that as a placatory form letter that promises nothing in reply. So sick people will continue to be given completely inappropriate ideas of what they should be doing to get better.
     
  17. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I think if we want to get savvy about down ratings then NOT giving things a 1 might be better. I'm given to understand there is some sort of underlying algorithm so if it sees many 1 ratings will view that as a ratings attack and compensate. Perhaps going on and giving 3 ratings and some 2's would work. Just a thought for future garbage that has a rating scale.
     
  18. Hutan

    Hutan Moderator Staff Member

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    Could be true @Snowdrop, but I was trying to give a '1' rating very early on when there was only one rating. So if there is an algorithm, the bar for an 'attack' must be set very low i.e. one '1' rating.

    (I wrote a complaint about their rating system on the same night I wrote a complaint about their pilates video :)D I must have been very grumpy that night), but I haven't had a reply yet.)
     
    Last edited: Oct 12, 2018
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  19. Andy

    Andy Committee Member & Outreach

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    If anybody is up for further advocacy, how about contacting the people who made the video itself? There is a direct link to their website on the same page as the video.
     
  20. Hutan

    Hutan Moderator Staff Member

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    Here's the reply from the NHS about the rating system (there's also a comment in the reply about the video - I had replied to their reply.

    Dear xxx,

    I apologise that the rating system does not seem to be working on this page. Rest assured, I have received your feedback on this video and am working with in house clinicians currently to find a solution to your complaint.

    Also, please bare in mind that the NHS site is going through a change and the page enabling you to leave feedback will be decommissioned soon aligned with the new NHS site. You will still be able to write in with comments and comment on videos on our YouTube channel.

    Thank you for your message and I hope this clarifies some of your frustrations. I will pass on the details of the ratings not working to the appropriate team.

    Kind regards
    The Digital Multimedia Team
     

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