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the number of times I've seen people who have ME or people who have Long COVID with PEM post for the first time in some forum saying "hey I'm new here and my doctor recommended [some version of graded exercise therapy by another name or slightly watered down] and I'm actually getting worse--does anyone know what's up with that?" induces truly rageful thoughts in me
Stop telling chronically ill folks to push through pain and exhaustion. It is killing us. Our bodies don't respond to demands the same way your abled body does. We don't build endurance or strength the same way your abled body does. Forcing chronically ill folks to push through degrades our bodies further, making us sicker. Stop pushing chronically ill folks to meet abled standards and expectations. It. Is. Killing. Us.
(And stop telling chronically ill folks that they need cognitive behavioral therapy).
The British National Institute for Health and Care Excellence (NICE) recently published its updated guidelines for myalgic encephalomyelitis
The analysis of the 2017 Cochrane review reveals flaws, which means that contrary to its findings, there is no evidence that graded exercise
Homepage for comprehensive information on pacing as a treatment for ME/CFS and fibromyalgia
Pushing through is detrimental. If there's any hope in increasing capacity, it's in carefully recognizing limits and pacing activity.
I've finally pulled my notes together from the second pain self-management workshop (two-hour workshops are a bit long for me right now so its taken days to recover)...
[If you missed part 1, this link will take you back.]
The first part of Session 2 covered four mindfulness exercises/tools:
The '5, 4, 3, 2, 1 Grounding' technique. If you haven't heard of this one, you basically notice and connect with things around you using your five senses to help ground yourself; notice five things you can see, four things you can touch/feel, three things you can hear, two things you can smell, and one thing you can taste. The presenter said the order doesn't matter too much. [Personally, I think this can be a useful tool; I've used it for anxiety with some success. I often can't smell or taste things so I just substitute in more things I can see or hear. I don't know if I would say it's helpful for dealing with my chronic pain, though (and sometimes noticing what I can feel is the last thing I wanna do).]
'Parking worries': Write down worries throughout the day but otherwise ignore them until reflection time. Set aside time for reflection and review your list during that time and express your thoughts/feelings (doesn't have to be through writing; you can draw or do some other form of expression), problem-solve if needed, and challenge thought patterns. You can choose to keep your little list of worries or burn it or dispose of it somehow. The presenter noted that you might find that you don't need to do much problem-solving by the time you get to reflection time.
A visualisation exercise in which you place your hand on your head or chest or wherever you feel your emotions are held, and then visualize kindness and compassion flowing outwards from your hand. [Tbh, I'm not really sure I understood this one so if anyone's got any further info or experience with this kind of exercise please jump in and explain.]
'Square Breathing': breathe in (through your nose) for 4 seconds, hold for 4 seconds, breathe out (through your mouth) for 4 seconds, hold for 4 seconds, and repeat. The idea behind this one is that, when we do shallow breathing because we're in pain, it can increase anxiety, but deep breathing reduces stress and that, in turn, reduces pain signals.
This first presenter also recommended two free apps:
'Breathly' for breathing exercises ➡️ I found the links for this app on Google Play Store and the Apple App Store
and 'CBTi Coach' for sleep ➡️ Play Store | App Store [Ysk that this app was created by the US Department of Veterans Affairs]
For the second part of this session, we had a physiotherapist talk about exercise and activity:
This presenter recapped the difference between nociceptive pain and nociplastic/chronic pain, as well as the concept that when pain is chronic, it has outlasted its usefulness (pain signals are normally protective).
We should try to shift the focus from what level of pain we're experiencing to what function we have. Focus on improving and maintaining function rather than reducing pain. [I'm still undecided on how I feel about this idea]
Exercise won't make the pain go away (might reduce it) but it can maintain and/or increase function (keep us doing things alongside the pain). [I'm really happy that he admitted this because so often we hear the exact opposite from health professionals]
When choosing your exercise/activity, the best one is the one that you will enjoy (and feel motivated to do)
Start low/simple and build slowly
Don't forget/underestimate rest periods
Pacing is key so plan and prioritize (remember the Boom And Bust Cycle reduces our function in the long term).
Graded Activity Exposure was briefly mentioned but not explained in depth so the only notes I have on this are: do "small progressions"; this method teaches the brain that the danger response (fight-or-flight) isn't needed. [If someone's got more information about Graded Activity Exposure please comment/reblog or message me]
The physiotherapist guy also introduced us to the Biopsychosocial Model of pain as a good way of thinking about all the factors that influence chronic pain and how we deal with it. He said, keeping this model in mind, we need to respond to our pain with a holistic approach. I've included the diagram I drew in my notes but you might also like this resource from the NIH Pain Consortium.
[While I think this model is a great start at conceptualizing all the factors that influence chronic pain, and it works for me personally, I don't know where spiritual factors fit in. If you're a spiritual person, the 'Te Whare Tapa Wha' model from Māori culture could be a better conceptualization of wellbeing for you.]
👋 I'm keen to know what y'all think about the ideas I've described above so please feel free to reblog or reply (and anonymous asks are open if that feels more comfortable). Questions are very welcome too; I'll do my best to answer them or direct you to resources.
📚 If you're reading this a while after I've posted, then my notes from the third session are probably up; you can find all of these posts under the tag 'FibromyalgicAF notes'
Exercise and other forms of exertion can cause profound and lasting harm to people with ME: various forms of evidence
In this post:
My 2011 paper, "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome" included data from earlier surveys and discussed the issue of reporting of harms
I fucking hate Google for bringing up graded exercise therapy as the #1 option when I looked up treatments for CFS. Now I have to gently explain to my ableist and stubborn mother that GET is actually harmful to people with CFS, that I made a mistake by recommending it, and that forcing me to do it is more likely to cause me to become bedbound than it is to actually help me recover.
For anyone with CFS/M.E
I start my first session of G E T tomorrow & i’m apprehensive as it seems when I search it that I can’t really see many positive experiences/reviews. I myself am a little confused at the concept but i’ll give it a go. I don’t even really understand what the therapy is about or contains. Any help/advice will be greatly appreciated ❤️ (i’m UK based too)
Hello I am diagnosing you with exercise nukes your mitochondria and musculoskeletal cells and dumps lactic acid into your bloodstream at the same level that qualifies you for sepsis disease. I'm not totally convinced it's real BUT either way the solution is to exercise. Have fun okay byeee333!!!!
From: "Treatment Harms to Patients with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome" by David Marks (an eminent academic psychologist)
These are on my papers
