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== Patients and advocates == [[File:ME-CFS-sicknottired.png|thumb|right| alt=We're not tired, we're sick. Julie Rehmeyer, ME/CFS patient]] [[File:GET-CBT-ME-chronicfatiguesyndrome.jpeg|alt=Graded exercise therapy and CBT. "As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by GET, I am in a unique position to answer how harmful GET and cognitive behavioral therapy (CBT) really are. The basis of these therapies is false illness beliefs, meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise (2)." - Maik Speedy (2015). Annals of Internal Medicine.|thumb|459x459px|As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by GET, I am in a unique position to answer how harmful GET and cognitive behavioral therapy (CBT) really are. The basis of these therapies is false illness beliefs, meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise<sup>(2)</sup>." ―Dr [[Maik Speedy]] (Dec 2015). "Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Annals of Internal Medicine. 163(11): 884.]]<br style="clear:both"> *"We're sick, not tired" ~ [[Julie Rehmeyer]], science writer with ME/CFS<ref name="AmScientist2017">{{Citation | url =https://www.americanscientist.org/article/an-illness-observed-a-conversation-with-julie-rehmeyer | title = An illness observed: a conversation with Julie Rehmeyer | first = Dianne | last = Timblin | date = May-June 2017|work=American Scientist|volume=105| issue=3}}</ref> *"None of you are sick with ME/CFS because of how you live or think."<ref>{{Cite web|url = https://www.facebook.com/112338563637178/posts/176313930572974 | title = A poem I wanted to share |website=Facebook | first = Whitney | last = Dafoe | authorlink = Whitney Dafoe | date = Jul 2, 2020}}</ref> ~ [[Whitney Dafoe]] *"DYING"<ref>[https://www.facebook.com/cfsresearchcenter/photos/a.847535005318290.1073741828.630143697057423/973567226048400/?type=3&theater Chronic Fatigue Syndrome Research Center at Stanford University - Face Book - Whitney Dafoe - 12/29/2015]</ref> ~ [[Whitney Dafoe]] *“You wake up one day with a bad flu and it never goes away. Ever.”<ref>TheAtlantic.com "Quoted: the best quotes we heard from our sources today," October, 8, 2015 [https://www.theatlantic.com/notes/2015/10/quoted-on-100815/409795/]</ref> ~ Justin Reilly (TheAtlantic.com quote of the day, 10/8/2015) *"To conclude that activity avoidance causes fatigue (rather than fatigue being a direct cause of activity avoidance), is similar to concluding that a person has flu because they’ve taken a day off work, rather than the obvious conclusion that they’ve taken a day off work because they have flu."<ref>[https://pubpeer.com/publications/2A1DECF372E891487C3435A1677042 PubPeer Comment - Robert Courtney - 2/16/16]</ref> ~ [[Robert Courtney]] *A Twitter Rant ~ [https://twitter.com/2lisaland/status/658264477192888321 @2lisaland] - "I think it's such a shame when disabled people feel uncomfortable using aids when healthy ppl buy any gadget that makes life easier for them"<ref>[https://twitter.com/2lisaland/status/658264477192888321 A Twitter Rant @2lisaland]</ref> ~ Lisa England *"Think of Madoff or Enron in charge of a disease." #PACEtrial #CDC30YRS #MEclinics #OutcomeSwitching #CheaperThanResearch #FollowTheMoney<ref>[https://twitter.com/FibroMEcfs/status/699813469491605504 Twitter - @FibroMEcfs]</ref> ~ Fibro '73 ME/CFS '79 *"Eventually I received a diagnosis of 'chronic fatigue syndrome,' a name that feels insulting when your entire life has been stolen from you."<ref>[http://www.thewishdish.com/telling-story-forgotten-plague-chronic-fatigue-syndrome/ Telling the Story of a Forgotten Plague: Chronic Fatigue Syndrome - Wish Dish - Ryan Prior]</ref> ~ [[Ryan Prior]] *"For many ME/CFS patients--especially those on the severe end--fatigue isn't the most significant aspect of the illness at all. Neurological or gut problems are often worse--I know one patient who may end up dying because she can't eat and can't get appropriate medical care for this misunderstood condition. The name chronic fatigue syndrome has created enormous confusion about the nature of the disease, making people think it's a variation on how they feel when they're really worn out. That's simply not the case—we're sick, not tired." ~ [[Julie Rehmeyer]]<ref name="AmScientist2017" /> *"When the check came I couldn't sign my name...My brain was burning."<ref>[https://www.youtube.com/watch?v=IW11Je8pm20 Canary in a Coal Mine Preview - ME (CFS) - You Tube 2:09 - 2:15 Jen Brea]</ref> ~ [[Jennifer Brea]] *“Jay Levy saw ten women," the doctor later recalled, "And he thought they were all hysterical. Then he saw a man, whose complaints he took seriously.”<ref>[https://www.goodreads.com/work/quotes/1139201-osler-s-web-inside-the-labyrinth-of-the-chronic-fatigue-syndrome-epidem Hillary Johnson from Osler's Web]</ref> ~ [[Hillary Johnson]] from [[Osler's Web]] *When he ([[Brian Walitt]]) says that [[fibromyalgia]] is real to patients, he, of course, means it’s not real to him.<ref>[http://thoughtsaboutme.com/2016/02/21/brian-walitts-radical-bias-disorders-of-subjective-perception-mecfs-as-normal-life-experience/#comment-21873 Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience? - J.K. Burmeister 2/21/16]</ref> ~ [[Jeannette Burmeister]] *"For most patients [[Chronic fatigue syndrome|CFS]] isn't a diagnosis, it's an accusation."<ref>[https://twitter.com/fabrahamwriter/status/701156441323917312 For most patients CFS isn't a diagnosis, it's an accusation - ~ @fabrahamwriter]</ref> ~ [https://twitter.com/fabrahamwriter @fabrahamwriter] *"It’s the utter cluelessness about who we are that is disturbing." (About [[NIH Post-Infectious ME/CFS Study]])<ref>[http://www.meaction.net/2016/03/04/meactions-questions-for-nihs-intramural-study-team/ #MEAction’s Questions for NIH’s Intramural Study Team - Comments - Mary Schweitzer]</ref> ~ [[Mary Schweitzer]] *"I don't think anyone apart from #spoonies understands how horrific it is to be stuck in this middle ground, ambitious but not capable."<ref>[https://twitter.com/mindandthemagic/status/719890035286388736 "I don't think anyone apart from #spoonies understands how horrific it is to be stuck in this middle ground, ambitious but not capable."]</ref> ~ [https://twitter.com/mindandthemagic/status/719890035286388736 @mindandthemagic] *"Telling someone w/ME you know how they feel bc you get tired is like telling someone w/cancer you know how they feel bc you stubbed your toe"<ref>[https://twitter.com/SKWixey/status/723897594238349313 Telling someone w/ME you know how they feel bc you get tired is like telling someone w/cancer you know how they feel bc you stubbed your toe]</ref> ~ [https://twitter.com/SKWixey @SKWixey] *“Psychiatry has become the place where we shunt illnesses that we don’t yet understand.”<ref>[http://www.meaction.net/2016/07/04/jen-brea-gives-rallying-ted-talk/ Jen Brea @ TedSummit - MEAction]</ref> ~ [[Jennifer Brea]] *"Will @Lancetpsychiatry PACE proved to be #MECFS Stonewall?"<ref>https://twitter.com/coyneoftherealm/status/661318252312694784</ref> ~ Dr. [[James Coyne]] *"Instead of working to relieve patients of the burden of M.E, British medicine is working to relieve itself of the burden of M.E patients."<ref>[https://justpaste.it/10ksr Instead of working to relieve patients of the burden of M.E, British medicine is working to relieve itself of the burden of M.E patients.]</ref> ~ @batteredoldbook *"As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by [[Graded exercise therapy |GET]], I am in a unique position to answer how harmful GET and [[cognitive behavioral therapy]] (CBT) really are. The basis of these therapies is [[illness beliefs |false illness beliefs]], meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise." ~ Dr [[Maik Speedy]], Annals of Internal Medicine (2015)<ref>{{Cite journal | last = Speedy | first = Maik | authorlink = Nice guidelines blog | date = Dec 2015 | title = Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | url = http://www.annals.org/data/journals/aim/934718/aime201512010-l155178.pdf | journal=Annals of Internal Medicine|volume=163|issue=11 | pages = 884|quote=As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by [[Graded exercise therapy |GET]], I am in a unique position to answer how harmful GET and [[cognitive behavioral therapy]] (CBT) really are. The basis of these therapies is [[illness belief|false illness beliefs]], meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise.<br >The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, not chronic fatigue, and GET and CBT force you to ignore your symptoms to exercise your way back to full fitness. If you do that, you exceed your limit and cause a relapse, and the more you exceed your limit, the bigger the relapse and the less likely you are to recover from it. Many patients with this condition have become [[severe and very severe ME |homebound and bedridden]] because of a major relapse caused by GET, and we will get our health and independence back only if we receive proper medication.}}</ref>
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