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#StopP2P4ME #TweetStorm Protest

METweetStorm Jun 10th, 2014 622 Never
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  1. #StopP2P4ME Tweetstorm Protest
  2.  
  3. We are protesting to stop the NIH P2P for ME via #StopP2P4ME #Tweetstorm.
  4.  
  5. The Weekly #StopP2P4ME Tweetstorm Every Saturday All Day!!!
  6. And will continue weekly until the NIH P2P for ME is stopped.
  7.  
  8. Thankyou in advance for your help! If you can join us for 7pm EST, that would be great too.
  9.  
  10. If you choose to participate, please copy/paste one tweet from below per 5 minutes at the appointed time. You are welcome to send more than 1 Tweet per minute but be aware of the limitations Twitter has to 116 an hour and 1000 Tweets in a day. Send more than these limits and your account may end up in "TwitterJail:"
  11.  
  12. http://www.urbandictionary.com/define.php?term=Twitter%20Jail
  13.  
  14. PLEASE NOTE: Re-tweets do NOT trend the hashtags - in order to trend the hashtags, we MUST copy/paste. Also, tweets with more than 3 hashtags DO NOT HELP the tags trend.
  15.  
  16. If you Re-Tweet/RT, to prevent "TwitterJail" for you or the person you are retweeting the tweet of, its best to change one word in the tweet so twitter does not read the tweet as a double. Twitter will actually tell you its a double by telling you that you "just said that."
  17.  
  18. The storm goes on as long as people are tweeting. If you send all the tweets, Twitter won't let you send exact duplicates for a while, but you can change as little as a single character and send a 'new' Tweet. There is no time limit we just ask that you participate as long as you are able to. Every single Tweet does in fact make an impact.
  19.  
  20.  
  21. About NIH P2P for ME:
  22.  
  23. NIH P2P Systematic Review For ME published online 5/2/2014.
  24.  
  25. The NIH P2P systematic review was supposed to be designed to further research.
  26. This review will not further research as it contains non medical therapy which is harmful to #ME patients.
  27.  
  28. The authors of this review did not exclude non-medical therapy GET/Grade Exercise Therapy which is harmful to ME and CFS patients.
  29.  
  30. The authors were negligent in not excluding the non-medical therapy of GET/Graded Exercise Therapy from the NIH P2P review for ME and CFS patients as the results of the 3 different research groups were known before publishing date of May 2nd, 2014.
  31.  
  32. Evidence used for the NIH P2P Systematic Review cited 6 defintions for ME and CFS:
  33.  
  34. -Centers for Disease Control and Prevention Fukuda et al., 19942
  35. -Canadian Carruthers et al., 2003
  36. -Revised Canadian Jason et al., 2010
  37. -International Consensus Statement Carruthers et al., 2011
  38. -London Dowsett, 1994
  39. -Oxford Sharpe, et al. 1991
  40.  
  41. All of cited defintions except the Oxford definition point out post activity exacerbation of symptoms after trivial amount of activity, physical or mental fatigue or muscle weakness after minimal exertion which may persist long after exertion ends, Post Exertional Neuro Immune Exhaustion, Post Exertional Malaise.
  42.  
  43. The authors of the NIH P2P Systematic Review for ME and CFS allowed The Oxford definition criteria of GET/Graded Exercise Therapy to "slip through the cracks" and to be included in the systematic review as one of the non-medical treatments for ME and CFS. This was NEGLIGENCE of the authors, because it does not include that key piece of data in the definition which states that GET or Graded Exercise Therapy causes a post activity, whether physical or cognitive, exacerbation symptoms, long after exertion ends, Post Exertional Neuro-Immune Exhaustion, or Post Exertional Malaise.
  44.  
  45. This NIH P2P Review for ME and CFS was published on May 2nd, 2014, which was after 3 CPET VO2 Max Studies, that were completed by 3 different research teams stated below:
  46.  
  47. Dr. Enlander of the Mt Sinai Medical Center in NYC: November 20th, 2013: "Incorrect Govt Criteria Hurts Chronic Fatigue Syndrome Patients:: http://bit.ly/1hX7MFm
  48.  
  49. Dr. Snell and Dr VanNess of the Workwell Foundation in California: June 23rd, 2013 http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short
  50. http://www.workwellfoundation.org/research-and-latest-news/
  51.  
  52. Dr. Betsy Keller in Ithaca NY: September 17, 2013 http://beforeitsnews.com/health/2013/10/exercise-physiologist-prof-betsy-keller-mecfs-patients-will-respond-abnormally-to-2-day-cardiopulmonary-exercise-tests-2-2508464.html
  53.  
  54. All 3 different research groups, in 3 different centers, where CPET VO2 Max testing using the Stevens Protocol was performed, all resulted in the same findings!
  55.  
  56. Findings:
  57.  
  58. -Abnormal Recovery Response to Aerobic Exercise- up to 7 days
  59.  
  60. -Decreased Functional Capacity or a drop in VO2 Max during test #2, 24 hours after test #1 due to metabolic abnormalities, thus causing post activity or exercise exacerbation of syptoms, PEM, PENE
  61.  
  62. -ME/CFS participants were unable to reproduce most physiological measures at both maximal and
  63. ventilatory threshold intensities during a CPET performed 24 hours after a prior maximal exercise test.
  64.  
  65. -Decrease in anaerobic threshold from test 1 to test 2 causing a decrease or lower threshold for physical activity.
  66.  
  67. -Results from the second test indicate the presence of a CFS related post-exertional fatigue
  68.  
  69. -Significant Post Exertional Amplification of Symptoms.
  70.  
  71. -Ability to generate energy from the aerobic system is significantly impaired.
  72.  
  73.  
  74. These results correlate with Dr. Enlander's statement- INCORRECT GOVERNMENT CRITERIA IS HARMFUL TO ME AND CFS PATIENTS, NEW RESEARCH FINDS!
  75.  
  76. These results correlated with what patients have said for the last 30 years.
  77.  
  78. THE RESULTS OF THE 3 CPET VO2 MAX STUDIES PERFORMED BY THE 3 DIFFERENT RESEARCH GROUPS, SHOW THAT THE 1991 OXFORD DEFINTION FOR CFS IS OUT OF DATE, OBSOLETE, DOES NOT APPLY TO ME OR CFS, AND IS HARMFUL TO PATIENTS WITH ME AND CFS!  
  79.  
  80. Because of these results, there is no way that Oxford Definition criteria can be used in good conscience at this point, because of clear bioethical issues, negligence by the authors, and if allowed to be used will be a bioethical violation and negligence by the P2P Panel knowing that the non medical therapy of GET is in fact harmful to ME and CFS patients.
  81.  
  82. There was also noted that there is no disclosure to non-medical lay people who will be participating in this process that the non-medical therapy of GET is harmful to ME and CFS patients.
  83.  
  84. The Non-Medical Therapy of GET or Graded Exercise Therapy will not advance research via the NIH P2P Study for ME and CFS as it is a therapy that is harmful to ME and CFS patients.
  85.  
  86. This NIH P2P Systematic Review for ME and CFS patients MUST be retracted and MUST be canceled as it will not advance research as explained above, has bioethical violations, is negligent, and is harmful to ME and CFS patients.  
  87.  
  88.  
  89. Hashtag: #StopP2P4ME
  90.  
  91. Tweet Targets:
  92.  
  93. @NIHDirector Dr Francis Collins
  94.  
  95. @NIHClinicalCntr Christin Grady RN PHD, Chief of Bioethics, Dr Fauci’s wife is located at that twitter handle.
  96.  
  97. Tweets!
  98.  
  99. Thankyou 4 Joining us 4 The Weekly #StopP2P4ME #Tweetstorm ! Info & Tweet List here: http://bit.ly/1jGanjO
  100.  
  101. Plz Join #StopP2P4ME TWEETSTORM Every Sat!
  102. #ME Patients R Being Faced With HARMFUL TX PROVEN 2 HARM #ME PTS! http://pastebin.com/rYGiEaed
  103.  
  104. Dr Collins! Yes, its that day of the week again where all your favorite #ME patients want to talk with you! @NIHDirector @StopP2P4ME
  105.  
  106. Dr. Collins: The Systematic Review for #ME is Negligent & must be stopped! It is not science! @NIHDirector #StopP2P4ME
  107.  
  108. P2P 4 ME fatal flaw: Studies prove GET IS MOST HARMFUL & LEAST HELPFUL INTERVENTION 4 #MEcfs! #GETKILLS ! #StopP2P4ME @NIHDirector
  109.  
  110. “A FOREIGN & ILLOGICAL RESULT” DR. B KELLER ON EXERCISE TESTING IN ME CFS Sept 13th 2013 #StopP2P4ME @NIHDirector bit.ly/1nSG4Yx
  111.  
  112. #ME Patient Brynmor John DIED IMMEDIATELY FOLLOWING “UNFOUNDED MED ADVICE OF GET” OUTRAGE! #StopP2P4ME @NIHDirector http://bit.ly/1u8FEki
  113.  
  114. Disabled #ME PT Dr L Baldwin Vascular Surgeon EXPLAINS “Post-Exertional Debility in ME cfs” @NIHDirector #StopP2P4ME http://bit.ly/1sa4HI1
  115.  
  116. #ME patients Need Real Treatments Not Junk Science Coming From P2P! Stop Wasting Tax $$$ Stop Harm! Start Helping! @NIHDirector #StopP2P4ME
  117.  
  118. Dr Collins: NIH P2P Study 4 ME cfs includes Non Med Tx that will HARM #ME Patients PROVEN by 3 Research Studies! @NIHDirector #StopP2P4ME
  119.  
  120. Dr Collins: Would U Harm PTs by admin wrong TX? Why should #ME PTs receive wrong TX? @NIHDirector #StopP2P4ME
  121.  
  122. Dr Collins:
  123.  Patients are not criminals! Patients do not go in front of juries! @NIHDirector #StopP2P4ME
  124.  
  125. http://www.cfstreatmentguide.com/blog/advocates-to-nih-pull-the-p2p
  126.  
  127. Dr Collins: P2P 4 ME Includes Non Med Tx PROVEN HARMFUL 2 #ME Pts IT MUST BE STOPPED http://bit.ly/1nSG4Yx @NIHDirector #StopP2P4ME
  128.  
  129. Dr Collins:The 1994 Fukuda Def 4 “CFS” Can B Proven NEGLIGENT With a Webster’s Dictionary wp.me/p4iD2N-2V #StopP2P4ME @NIHDirector
  130.  
  131. Dr Collins: P2P Study 4 ME will violate & usurp ME patients Bioethx & Disability Rights via Harmful Tx @NIHDirector #StopP2P4ME #DoNoHarm
  132.  
  133. Dr Collins P2P “Research Protocol” Pub 5/2/2014 Is In Violation of 1964 Dec of Helsinki
  134.  
  135. http://bit.ly/1pDEfWn
  136.  
  137. @NIHDirector #StopP2P4ME
  138.  
  139. Dr Collins
  140.  ME Patientts Rights 2 Life have been VIOLATED->NO Treatment! P2P 4 ME will NOT ADVANCE Research @NIHDirector
  141.  #StopP2P4ME
  142.  
  143. Dr.Collins #ME Pts, have brain inflammation, trivialized by a CFS Dx, I think that’s a crime, don’t U? @NIHDirector #StopP2P4ME
  144.  
  145. Dr Collins: Stephen Straus harmed ME PTs via the “CFS” scam http://www.cfidsreport.com/images/Straus_001.jpg
  146.  @NIHDirector #StopP2P4ME” pic.twitter.com/yieRpjU9vo
  147.  
  148. Dr Collins #ME pts human rights have been violated 30 years under the CFS wastebin @NIHDirector #StopP2P4ME
  149.  
  150. Dr Collins ME Patients R Faced With Treatment Proved Harmful & That Has Disabled ME Patients For 30 Years @NIHDirector  #StopP2P4ME
  151.  
  152. Dr Collins Instantly U can’t practice Ur career again, EVER! Ur mind & body R a WASTELAND! NO END! It could happen #StopP2P4ME @NIHDirector
  153.  
  154. Dr Collins: ME patients have been harmed by the CFS scam! #StopP2P4ME #DoNoHarm #Anon @NIHDirector
  155.  
  156. Dr Collins: Brynmore John DIED FROM THE “Unfounded Med Advice of GET” en.wikipedia.org/wiki/Brynmor_John @NIHDirector  #StopP2P4ME
  157.  
  158. Dr Collins: Dr Joan Grobstein MD with #ME tells it like it is!
  159.  NIAIDS Doc Does Not! youtu.be/Md1qBjU2bnE #StopP2P4ME @NIHDirector
  160.  
  161. Dr Collins MALAISE IS NEGLIGENT DESCRIPTION OF THE SYMPTOM! P2P Agenda 4 ME is INCORRECT AND NEGLIGENT! @NIHDirector #StopP2P4ME
  162.  
  163. Dr Collins P2P Stands 4 “Pathways 2 Prevention”.How does NIH xpect 2 PREVENT ME,when NIH “SAYS” ME is a mystery?
  164.  @NIHDirector #StopP2P4ME
  165.  
  166. The Symptom IS NOT MALAISE!! Elementary my dear Watson! #MEisnotCFS wp.me/p4iD2N-2I #StopP2P4ME @NIHDirector
  167.  
  168. Dr Collins MALAISE IS NEGLIGENT DESCRIPTION OF THE SYMPTOM! P2P Agenda 4 ME is NEGLIGENT! @NIHDirector
  169.  #StopP2P4ME http://bit.ly/SEvI61
  170.  
  171. Dr Collins: 2014 P2P 4 ME & 1994 Fukuda Def 4 CFS BOTH HARMFUL 2 #ME PTs, DID NOT & WILL NOT ADVANCE RESEARCH! #StopP2P4ME @NIHDirector
  172.  
  173. Dr Collins: The 1994 Fukuda Definition 4 CFS WAS A DISASTER! KEPT US IN A 30 YEAR HELL! The P2P 4 ME Is Worse! #STOPP2P4ME @NIHDirector
  174.  
  175. Dr Collins “DO NO HARM” #ME Pts Have Suffered Harm From Wrong Tx Brynmor John->GET Fatality http://bit.ly/1u8FEki @NIHDirector  #StopP2P4ME
  176.  
  177. Dr Collins “DO NO HARM” #ME Pts Have Suffered Harm From Wrong Tx Brynmor John->GET Fatality http://bit.ly/1u8FEki @NIHDirector#StopP2P4ME
  178.  
  179. #ME Patients R Being Faced With Proven Harmful Treatment That Will Disable ME Patients! @NIHDirector
  180.  #StopP2P4ME #DoNoHarm
  181.  
  182. Dr Collins: ME Patients have been SCAMMED AND MALTREATED FOR 30 YEARS!!!! ENOUGH! #StopP2P4ME @NIHDirector #DoNoHarm
  183.  
  184. Dr Collins: ME/cfs PTs imprisoned in Dx. LIFE SENTENCE w/NO ‘real’ treatment. Negligence by HHS! TOTALLY IMMORAL! #StopP2P4ME @NIHDirector
  185.  
  186. Dr Collins: P2P 4 ME “JURY MODEL” is a Mengele style study, Either way, Patients DO NOT GET FAIR TRIAL! @NIHDirector #StopP2P4ME
  187.  
  188. Dr Collins, If ur doctor said U had “ChronicFatigueSyndrome”                      
  189. What would U say?
  190.  Would U tell anyone? #StopP2P4ME @NIHDirector
  191.  
  192. C Grady RN Chief of NIH #Bioethx: NIH P2P Study 4 ME Has Bioethics Violations. A VERY Poor Reflection on @NIHClinicalCntr #StopP2P4ME
  193.  
  194. C Grady RN Chief of Bioethx: Wouldnt It make sense that @NIHClinicalCntr #Bioethx Dept Check Its Sys Reviews 4 Tx Harmful 2 PTs? #StopP2P4ME
  195.  
  196. C.Grady Chief Bioethx Why is @NIHClinicalCntr #Bioethx Dept Allowing A Negligent Systematic Review 2 B Used in a NIH P2P Study? #StopP2P4ME
  197.  
  198.  
  199.  
  200. You can use your own tweets, you don’t have to use the ones that I put here, they are examples.
  201.  
  202. Please include the Hashtag #StopP2P4ME in your tweets! :)
  203.  
  204. Lets Reminds these Practitioners including Dr. Francis Collins
  205.  
  206. They Made The Promise To
  207.  
  208. “DO NO HARM”
  209.  
  210. That they have not listened to M.E. Patients,
  211.  
  212. And,
  213.  
  214. M.E. Patients have been harmed because of the NEGLIGENCE
  215.  
  216. AND
  217.  
  218. NON COMPASSIONATE AND RUDE MEDICAL PRACTITIONERS!
  219.  
  220. Thanks so much in advance for participating!
  221.  
  222.  
  223.  
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