Activity Intolerance and Pacing - ME/CFS and FM Educational Video Series

Activity intolerance and Post-exertional malaise are often misunderstood aspects of ME/CFS and FM. Learn why physical and cognitive activities can cause symptoms to worsen and how to identify and improve the “threshold” of relapse. Review the importance of pacing and realistic expectation setting that can minimize and even improve symptoms.

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This video is not intended to be a substitute for professional advice, diagnosis, treatment or the medical recommendations of your medical team.

We advise viewers to carefully review and understand the ideas presented and seek the advice of medical providers with any questions you may have as it relates to your patient-specific situation.

[hopealways]

Finally a physician who call's it what it is,
" Activity Intolerance", I have called it this for years & been told by my Dr's I was exaggerating. Thank you for ALL you do.

[jilllampron]

If this can be measured then why do we get treated so badly? I've had Fibromyalgia and ME/CFS for 11 years (diagnosed not suffered). I can't get help from any doctor. I have been told I'm too fat, too skinny, needed to exercise/go to the gym, given horrible medication that made me very ill and/or allergic reactions. I've been put down, called names, passed off, told it was all in my head, and much more. I refuse to see doctor's anymore. While this video is very informative and sounds like a great study, will it help us? We are suffering horribly at the hands of these doctor's that just don't believe us and/or don't care at all. I live in constant pain 24/7 I'm extremely fatigued everyday all day. No one cares. I cannot pace because it doesn't matter what I do or how much I rest. I'm always in debt as you put it.

[mdee]

Thank God (or whatever is good, that you believe in) - for this video. Wish it was mandatory viewing in Med. Schools and all teaching hospitals. I wish your center was near me, but I am in NJ. I've been a Zebra for so long, I'm so very tired. I have serious cervical spine damage from a horse accident, but also ME/CFS. I also have many other Dysautonomia symptoms. We need specialists on the East Coast. Please consider opening another Clinic here.

[artstar]

Best video I’ve seen on this! I have long covid, with a lot of symptoms of CFS. I’ve been finding I crash hard for days after hitting a certain point just from walking. This helps me understand what’s going on in my body and how to avoid depleting myself.

[kristinae.]

WOW! This is so incredibly helpful!! I have had ME/CFS for 20 years, and you are FINALLY helping me understand why my whole body and mind feel like crap after I exercise. Exercise is supposed to make us healthier, so I force myself to work out several times a week. I guess I need to reconsider that.

[StevenLevin-ti]

Incredible Dr. Bateman! Thank you for putting this together.

[juanpabloes]

Dear all,
Thank you for the video. It would be great if you activate the option of automatic subtitles, in order to have additional support for no native english speakers.
Best wishes

[sapofish]

I wanna say Dr Bateman should get the Nobel Prize in medicine!! It's so hurtful, frustrating, and harmful for so many doctors to say "that's not a real illness." why do you say that? because women are the ones overwhelmingly stricken with it?! Validation goes a long way! the mental health piece about being believed, and taken seriously, and appropriately treated means so much. In short, it means healing! (without it the opposite is also true, I have found). "Thank you" doesn't even begin to express my gratitude, Dr Bateman!

[Yazzie]

This info is exactly what I needed to know! Working physically full time I’m seeing myself decline.. I just want to know so that I can evaluate my work life.. disability won’t cover any impairment associated to ME/CFS! 😢 THANK YOU SO MUCH FOR THIS WONDERFUL INFO! 👍🙏

[pamelasmith]

Very interesting video. Thank you. I have had fibromyalgia for the past 35 years, and used to walk every day and swim 3 - 4 days per week. The past two years I cannot hardly walk at all. My exhaustion is off the charts. I could sleep all day. If I over exert myself even for a short time, my symptoms are exacerbated. Over the last few years my symptoms are totally debilitating and I hardly have any quality of life. My two sons, who are wonderful, just don’t understand what I am going through and I feel like they judge me all the time. They constantly make comments about me not trying hard enough, and think I should be traveling more. I don’t know how to make them understand just how difficult dealing with travel with airports, sensory issues on the plane. Cannot tolerate hot climates and sun. Sleeping in a strange bed. They just downplay my explanations, so I just feel like I am complaining. They are wonderful men, but just don’t understand the constant pain and discomfort I deal with every minute of every day. Thank you so much for this great video. ❤️🇨🇦

[sallysampson]

I am constantly at my wits end with ME after 30 plus years!! Watching and listening to you made me think again!!
My issue is, after an exacerbation (all the time) I crash into a crash. Because I have a ‘better’ moment and try to catch up basic stuff and I stay upright and keep going until the red warning light has been on for way too long and down I go again. I’m going to do a tiny thing and stop, clearly the way I’ve been living/existing hasn’t worked at all.
What really frightens me most is I’m quite severe and I can’t feed myself without a crash. Wash = crash etc how do I better manage?

[vickieoz]

makes a lot of sense...I have both and after 20 mins of hydrotherapy I suffered for 2 days after it. Tai Chi is beneficial and doesnt cause PEM.

[JacquiQ]

I wish someone had given me a diagnosis in the last 23 years since my symptoms started. i def have CFS but have had to diagnose myself. Complicated or caused by Hashimoto's, which in itself has symptoms that mimic CFS. No help at all from Dr's. Told I had a 'bit' of fibro in my shoulders. How can u have a 'bit' of fibro. Thank God for YT content these days to help us. I get the worst PEM, it is just awful, u can do next to nothing activity wise and be in bed for 2 days. people just do not understand how devastating CFS is on every aspect of your life. It is a miserable existance.

[mdee]

@ Yaz - try to purchase through work, a disability plan like AFLAC. I wish I did, but just didn't recognize how severely ill I was becoming. Good luck.

[peterjongema]

Thank you SO much for this information.

[snowstorm]

This is the best idea of "Pacing' I have come across in the years of having this. My Thanks to you once again,
I just hope I do a better job with the pacing of that dollar than the "disability income", I' still am grateful and feel blessed 🙏 (smile). bless you.💞

[jbb]

Thank you. I'm going to share this with my physical therapist. Right now I am trying to recover from a crash from being pushed beyond my threshold at PT. I have had fibromyalgia for a few years and now long covid for several months. I had a tilt table test today (furthering the crash) and was diagnosed with POTS and another dysautonomia condition. I hope more professionals in the "health care" industry will learn about this.

[MissiBoo]

This is very interesting. I understand pacing but sometimes it's better to get back to basics. Thank you

[mdee]

Thank you Dr. Bateman, and also 'Thank You' to all the researchers working worldwide - to help find a cure for this devastating disease.

[michelleturner]

This information has been incredibly helpful to me. I was recently diagnosed with Hashimoto’s Thyroiditis and have been experiencing terrible fatigue after exercising. As someone who has always exercised regularly, this has been very discouraging. I believe the information in this presentation will be helpful to me as I try to strike a balance between maintaining fitness while not triggering an autoimmune response.