Sp4rkR4t :yes_scotland:<p>My daughter has a <a href="https://mastodon.scot/tags/wordpress" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>wordpress</span></a> site to act as her art <a href="https://mastodon.scot/tags/portfolio" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>portfolio</span></a> and prints shop through <a href="https://mastodon.scot/tags/printify" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>printify</span></a>. This is a bit heavy & slow way to do things but I wasn't well enough to build her anything custom.<br>I'm now a bit better at my <a href="https://mastodon.scot/tags/pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pacing</span></a> so was thinking about building her a new static site that plugs into her printify shop.<br>Anyone have ideas about what toolkits have wordpress import, handle image compression well and integrate with printify? <a href="https://mastodon.scot/tags/webdev" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>webdev</span></a> <a href="https://mastodon.scot/tags/spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonies</span></a> <a href="https://mastodon.scot/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a></p>
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Mx. Luna Corbden<p>Here's a little executive function tip based on my Splines Theory.</p><p>If you're having trouble starting a complicated and boring task, give yourself time to "load the splines." Splines are just my silly word representing the fact that ADHD and autistic people are more detail-oriented. We have a hard time accessing an idea by its summary, and need to think about the whole system with all its parts (splines) in order to grapple it. This takes time and energy.</p><p>But the good news is, reticulating splines is mostly a passive activity. First step, the hardest, is communicating to your brain about what it needs to load. </p><p>A few hours ago when I started gathering paperwork for taxes, I felt incredibly overwhelmed and my chronic pain was activated. So I pushed myself to kinda get started (updating my list from last year, opening the email folder, creating some folders on my computer), but then I hit a wall. Under intense overwhelm, I couldn't get started turning those emails into PDFs.</p><p>But my brain knows what it needs to do. It just needed time. I entered my passive splines reticulating phase, which can take anywhere from a few hours to a few days. Since I only have a week to get this to my CPA, the sooner I started the loading process, the better. Most of that happens in the background. The hardest part was telling my brain to start, which I did by giving a glance to the body of details I will need to absorb.</p><p>Then I went did a couple of hours of paid writing work which my brain normally expects on a Monday (so that went easier). And then back to taxes to see if things were flowing better.</p><p>And they are! I still hate it! But now my mind has an understanding of the task and it doesn't seem impossible.</p><p>I will work on it until I feel sick and foggy again, then I will pick up tomorrow where I expect it to go even more smoothly.</p><p>Here's my 2013 post on Splines Theory of neurodiverse executive function.</p><p><a href="https://defcon.social/tags/taxes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>taxes</span></a> <a href="https://defcon.social/tags/ADHD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ADHD</span></a> <a href="https://defcon.social/tags/ActuallyAutistic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ActuallyAutistic</span></a> <a href="https://defcon.social/tags/pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pacing</span></a> <a href="https://defcon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a></p><p><a href="https://www.corbden.com/2013/10/splines-theory-spoons-metaphor-for.html" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">corbden.com/2013/10/splines-th</span><span class="invisible">eory-spoons-metaphor-for.html</span></a></p>
Tom Kindlon<p>3/</p><p>“Anything worth doing is worth doing slowly with many breaks”</p><p><a href="https://disabled.social/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a> <a href="https://disabled.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicPain</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicpain" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>chronicpain</span></a></span> <a href="https://disabled.social/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonie</span></a> <a href="https://disabled.social/tags/spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonies</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>chronicillness</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/spoonies" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>spoonies</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Dave Underwood<p>One for all my friends suffering with ME/CFS and Long Covid.</p><p>Source: <a href="https://x.com/pain_lyn/status/1860971946126496012" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">x.com/pain_lyn/status/18609719</span><span class="invisible">46126496012</span></a></p><p><a href="https://mastodon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://mastodon.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://mastodon.social/tags/BrainFog" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>BrainFog</span></a> <a href="https://mastodon.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllness</span></a> <a href="https://mastodon.social/tags/pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pacing</span></a> <a href="https://mastodon.social/tags/pem" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pem</span></a> <a href="https://mastodon.social/tags/pese" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pese</span></a> <a href="https://mastodon.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.social/tags/ChronicFatigue" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigue</span></a> <a href="https://mastodon.social/tags/pwme" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pwme</span></a></p>
Tom Kindlon<p>🧵<br>I was very impressed by this new 6-minute video.</p><p>I thought I would do a thread of the different versions they have created to accommodate sensory sensitivities.</p><p>Firstly here's the full color & background music</p><p><a href="https://www.youtube.com/watch?v=gKWk99Fsd_o" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">youtube.com/watch?v=gKWk99Fsd_</span><span class="invisible">o</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PEM" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PEM</span></a> <a href="https://disabled.social/tags/pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pacing</span></a></p><p>1/</p>
Iris Volk<p><a href="https://mastodon.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a>/ <a href="https://mastodon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> ist eine echte Krankheit. Es sind Funktionen im Körper kaputt - welche genau, weiß man noch nicht. Heilung gibt es noch nicht. Es kann bis zu einem gewissen Alter jede*n treffen. Nicht nur nach <a href="https://mastodon.social/tags/Corona" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Corona</span></a>, aber Corona ist eine besonders häufige Ursache.</p><p>Was für Betroffene wichtig ist:<br>- ernstgenommen werden<br>- Ärzt*innen, die Hausbesuche und Online-Sprechstunden anbieten<br>- Therapeut*innen, die sich mit <a href="https://mastodon.social/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a> auskennen (Üben ohne Überlastung)</p>
Barbara Wimmer - shroombab<p>Heute war der Start meiner <a href="https://chaos.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> Reha. Beim Ärzt*innen-Aufnahmegespräch wurden die Reha-Ziele gleich verändert: Statt "Leistungssteigerung" ist bei mir "Crashs vermeiden" am Programm das Ziel. <a href="https://chaos.social/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a></p>
Tom Kindlon<p>5/</p><p>'Any measure that can prevent a worsening of symptoms will not only stabilise the condition but also reduce discomfort and improve the patient's quality of life,' according to the guidelines from the Norwegian Directorate of Health.</p><p><a href="https://disabled.social/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>2/</p><p>“(Contd) These technologies were used to understand the enigmatic long COVID illness and manage symptoms through pacing energy through finding correlations between activities and their impact on their self-tracked data."</p><p>Hashtags:<br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <br><a href="https://disabled.social/tags/CovidBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CovidBrain</span></a> <a href="https://disabled.social/tags/pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pacing</span></a></p>
Maggie Maybe<p><span class="h-card" translate="no"><a href="https://defcon.social/@corbden" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>corbden</span></a></span> pacing works so well I thought I got myself into remission in 2020 when we were allowed to do things virtually rather than running around to appointments. It was wonderful.</p><p>Then I decided I would increase my hours and work two full eight hour days a week in the closed office since I could work totally alone with the doors locked. </p><p>I actually couldn’t work two full days in a row, it took me exactly 4 weeks to figure that out. And then it took me another four weeks of no work to get back to the baseline I was at before I thought I was in remission. And I’m so sad I ruined it.</p><p><a href="https://zeroes.ca/tags/pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pacing</span></a> <a href="https://zeroes.ca/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a></p>
ilikebrains<p>EDIT: Danke, ich glaube, ich hab alles gefunden! </p><p>Hat jemand hier Erfahrung mit <a href="https://mastodon.social/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a>? </p><p>Mein Fitness-Tracker hat leider keine einstellbaren Alarmgrenzen, ich soll aber versuchen im moderaten Aktivitätsniveau zu bleiben. (Das erreichte ich schon beim spazieren gehen und aufräumen Zuhause. Nicht schnell Fahrradfahren gibt mir bereits mittlere bis Hochleistungsaktivität.) </p><p>Gibt es einigermaßen günstige Tracker oder Strategien, die empfehlenswert sind?</p>
ahimsa<p><span class="h-card" translate="no"><a href="https://neurodifferent.me/@exsangus" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>exsangus</span></a></span> </p><p>For folks having trouble with post COVID recovery (even if you're not officially diagnosed with Long Covid or ME/CFS) this pacing and management guide for ME/CFS might be helpful:</p><p><a href="https://www.meaction.net/wp-content/uploads/2021/02/Pacing-and-Management-Guide-for-ME_CFS-9.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">meaction.net/wp-content/upload</span><span class="invisible">s/2021/02/Pacing-and-Management-Guide-for-ME_CFS-9.pdf</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> </p><p><a href="https://disabled.social/tags/COVID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVID</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PostCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovid</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/PEM" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PEM</span></a> <a href="https://disabled.social/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a> <a href="https://disabled.social/tags/StopRestPace" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>StopRestPace</span></a></p>
Mikka<p>Hey liebe <a href="https://chaos.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> Bubble, hat hier jemand Erfahrungen mit Reha-Anträgen gemacht, bei denen man vom Arzt als „nicht rehafähig“ erklärt wurde, aber die Rentenversicherung einen trotzdem auf Reha schicken möchte in Kliniken ohne entsprechendes Konzept? </p><p>Widerspruch möchte ich sowieso einlegen, da auch angegebene Kliniken nicht beachtet wurden.</p><p><a href="https://chaos.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://chaos.social/tags/PostCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovid</span></a> <a href="https://chaos.social/tags/Reha" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Reha</span></a> <a href="https://chaos.social/tags/PEM" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PEM</span></a> <a href="https://chaos.social/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a></p>
E<p>Gonna write something soon about how I've been using a smart watch as <a href="https://spore.social/tags/assistiveTechnology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>assistiveTechnology</span></a> to help with <a href="https://spore.social/tags/pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pacing</span></a> for energy limiting illness, avoiding <a href="https://spore.social/tags/PEM" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PEM</span></a> <a href="https://spore.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> crashes... <a href="https://spore.social/tags/longCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longCovid</span></a> anyone else do this? Do you use other things as assistive tech? <a href="https://spore.social/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://spore.social/tags/adaptiveTechnology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>adaptiveTechnology</span></a></p>
Maggie Maybe<p><span class="h-card"><a href="https://pdx.social/@iMike" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>iMike</span></a></span> I hate that I saw this and immediately thought about how I used to have to rest after the shower.</p><p>I haven’t had <a href="https://zeroes.ca/tags/Covid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covid</span></a> but I got <a href="https://zeroes.ca/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> from mono. Now I take 0.5 mg <a href="https://zeroes.ca/tags/LDN" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LDN</span></a> in the morning and I don’t have to rest after the shower anymore.</p><p>I still do have to plan a rest day before and after a day that I have anything important to do. Just to make sure that I can take a shower and still go to the thing. </p><p>I don’t think you can practice <a href="https://zeroes.ca/tags/pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pacing</span></a> while you are still at the stage where you have to rest after every single thing, but once you get better from there you can figure out your proper rest periods.</p>
🦇BatiCorn🦇<p><a href="https://dresden.network/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a></p><p>Könnt ihr Apps empfehlen, in denen ihr Eure Symptome und Daten trackt?<br>Auch als Hilfestellung zum Erlernen von <a href="https://dresden.network/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a>.</p><p>Für Android. </p><p>Gern retröt.</p><p><a href="https://dresden.network/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a></p>
Marina Weisband<p>Irgendwann gebe ich sehr teure Kurse zu "wie erreiche ich ein vollwertiges Leben mit 20% der Energie und Zeit". Eigentlich könnten das alle machen, die <a href="https://chaos.social/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a> betreiben müssen. So many hacks.</p>
ahimsa<p><span class="h-card"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <span class="h-card"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> <br>There's a discussion of this document on the Science for ME forum here:</p><p><a href="https://www.s4me.info/threads/solve-m-e-patient-and-caregiver-resource-guide-post-exertional-malaise-pem-and-rest.35451/" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">s4me.info/threads/solve-m-e-pa</span><span class="invisible">tient-and-caregiver-resource-guide-post-exertional-malaise-pem-and-rest.35451/</span></a></p><p>I have not yet read the full 8 page document by Solve M.E. but at first glance I think this document by <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAction</span></a> is better</p><p><a href="https://www.meaction.net/wp-content/uploads/2021/02/Pacing-and-Management-Guide-for-ME_CFS-9.pdf" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">meaction.net/wp-content/upload</span><span class="invisible">s/2021/02/Pacing-and-Management-Guide-for-ME_CFS-9.pdf</span></a></p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PEM" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PEM</span></a> <a href="https://disabled.social/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a></p>
ahimsa<p>Document from Solve M.E.<br>(8 pages)</p><p>"Solve M.E. Patient and Caregiver Resource Guide: Post Exertional Malaise (PEM) and Rest"</p><p><a href="https://solvecfs.org/wp-content/uploads/2021/09/PEM-REST-Combined.pdf" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://</span><span class="ellipsis">solvecfs.org/wp-content/upload</span><span class="invisible">s/2021/09/PEM-REST-Combined.pdf</span></a></p><p>This PDF explains that PEM is NOT weakness, deconditioning, laziness, or aversion to exercise.</p><p>"PEM is the ongoing failure to recover."</p><p>My comment - Pacing & rest do help, but it can be difficult (symptoms fluctuate, unexpected tasks or problems, etc.). Keep expectations low. Not a cure!</p><p><span class="h-card"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <span class="h-card"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> </p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PEM" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PEM</span></a> <a href="https://disabled.social/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a></p>
ahimsa<p>From Bateman Horne Center:</p><p>"Dr. Brayden Yellman highlights the importance of resting & utilizing a careful regimen of both physical & cognitive pacing to avoid PEM"</p><p>Video series on PEM/PESE:</p><p><a href="https://www.youtube.com/playlist?list=PL-OZ_5Cqdc309Gp1hO4PpUKQIsTlyUf04" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">youtube.com/playlist?list=PL-O</span><span class="invisible">Z_5Cqdc309Gp1hO4PpUKQIsTlyUf04</span></a></p><p>Crash care kit essentials:</p><p><a href="https://batemanhornecenter.org/crash-care-kit-essentials/" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://</span><span class="ellipsis">batemanhornecenter.org/crash-c</span><span class="invisible">are-kit-essentials/</span></a></p><p>Video on pacing:</p><p><a href="https://www.youtube.com/watch?v=ssqBD1-AcII" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">youtube.com/watch?v=ssqBD1-AcI</span><span class="invisible">I</span></a></p><p><a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://disabled.social/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCOVID</span></a> <a href="https://disabled.social/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Fibromyalgia</span></a> <a href="https://disabled.social/tags/Pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pacing</span></a> <a href="https://disabled.social/tags/Resting" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Resting</span></a> <a href="https://disabled.social/tags/BatemanHorne" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>BatemanHorne</span></a></p>
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