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Patient Consent Profile picture
Patient Consent
@consent_patient
Amanda Rankin Personal opinion #LearnAboutMECFS #PostExertionalMalaise #IatrogenicPEM #OpinionNotEvidenceBased #systemicFailureInHealthcare #IAPTLTCMUS
Oct 2, 2021 • 12 tweets • 27 min read
@me_awareness @postersandme @AliceOutThere @TimC_syd @AtypicalPolioME @hellogeniegroup @tweetingmole BPS model places increased accountability on patients 4 their rehab & return 2 work . Including that sick role is temporary & that cognitions ,behaviours & social factors interact with physiology & perpetuate disability & reliance on benefits & can B managed 2 restore function @me_awareness @postersandme @AliceOutThere @TimC_syd @AtypicalPolioME @hellogeniegroup @tweetingmole That patients/ disabled are to cooperate with rehab and psych social factors are obstacles to expected recovery . This is why if don’t recover 6 months or obstacle to approach referred social services , deteriorate more intensive behavioural rehab IAPT & inpatient units .
Aug 30, 2021 • 18 tweets • 12 min read
Not sure why charities are asking patients to support the publication of the NICE #MECFS guideline update when the final version hasn’t been made available to view to see if stakeholder comments were included and what changes if any were made . The draft guideline is diabolical! Thread 👇 the NICE #MECFS guideline update/replacement is a sham - more of the same contraindicated behavioural rehabilitation
Aug 29, 2021 • 37 tweets • 41 min read
@postersandme @keithgeraghty Energy management is Activity Management rebranded as Pacing #MEinterventions

Note analeptic anaerobic energy management by @4Workwell is not mentioned by name or pacing .

Nor is #2dayCPET mentioned in identifying PEM in making diagnosis and contraindicated aerobic exertion @postersandme @keithgeraghty @4Workwell #MECFS NICE guide update rebranded Activity Management ( recommended in the previous guideline due to similarities with GET and includes all activity types & had no definition or evidence bace ) , as “Energy Management” .Claiming it achieves stabilisation & Activity tolerance !
Aug 29, 2021 • 10 tweets • 8 min read
@postersandme What specialist knowledge & approach do dieticians & paediatricians have ? A specialist interest in medically unexplained symptoms behavioural approach 2 CFS ? That patients being referred 2 by NICE guides .What evidence used 4“supportive” CBT by specialist in CBT for MECFS ? @postersandme NICE #MECFS guide replacement mentions “supportive” CBT does not “assume” people have abnormal beliefs and behaviour as underlying cause (as is the CBT model for specialist CBT for MECFS from a behavioural perspective )

Yet it still retains it …[1/3]
@keithgeraghty Image
Aug 28, 2021 • 7 tweets • 4 min read
NICE MECFS replacement guideline doesn’t mention objective post exertional malaise . Uses setbacks & relapses again as in 2007 guide

It mentions post exertional symptom exasperation instead in severe section

& mentions fear of relapse or post exertional symptom exacerbation Image NICE MECFS guide context section started MECFS is a multisystemic disease .

No mention aerobic activity rehabilitation is contraindicated

It says GET and it’s evidence bace is “controversial” and further research being done and another update Image
Aug 28, 2021 • 26 tweets • 22 min read
@MrTopple @TheChronicColab Here are some pointers on the previous 2007 #MECFS guideline which recommended antidepressants , activity management , sleep restriction and PEM management with no evidence bace . Have they done the same with the replacement guide twitlonger.com/show/n_1sqlvok @MrTopple @TheChronicColab Does replacement guide mention post exertional malaise by name & that it objectively tested via 2dayCPET or does it make non evidence based recommendations for setbacks & relapses again? NHS website Still claiming “pacing”no evidence & not explicitly stating all areasno evidence
Jul 24, 2021 • 11 tweets • 7 min read
@sepidgar2 Philanthropic endeavours - a great disguise for terrible crimes

As is the #CrimesAgainstHumanity currently committed under the disguise of “sustainability “
1/2 @sepidgar2 Including funnelling children into abusive social care system via increasing false accusations of factitious induced illness & medically unexplained symptoms ,under the guise of “parity for mental health “ & “sustainability” of private NHS joint providers of health & social care
Jul 22, 2021 • 12 tweets • 5 min read
How are doctors and fairing with providing informed consent when lawyers reiterating this right are being intimidated by the police ?

If you haven’t yet realised the tyranny we are living under

#NoVaccinePassport
#NoMandatoryVaccine Supreme Court ruling in Montgomery Vs Lanarkshire Health Trust , “replaced medical opinion with the informed decision of the particular patient.”

#NoVaccinePassport
#NoMandatoryVaccine
Jul 20, 2021 • 7 tweets • 4 min read
“the Committee also heard, however, was that there are significant areas of scientific uncertainty as regards to transmission, effectiveness of the vaccines, implications of new variants and accuracy of testing“

#NoVaccinePassports
#NoMandatoryVaccine
#clotshot “The data protection concerns raised above still appertain to the use of the NHS app for this purpose and the Government should ensure that the very minimum necessary personal data is shared with foreign governments”

#NoMandatoryVaccine
#NoVaccinePassports
Jul 19, 2021 • 23 tweets • 11 min read
“The Public Administration & Constitutional Affairs Committee call Government to abandon unjustified plans & says they have not made the scientific case, in its report on Covid 19 vaccine certification published today.“

#NoVaccinePassports
#NoMandatoryVaccines
#WeStandTogether “it did provide some indications that certification might be used for venues such as nightclubs, large events like football matches and for international air travel “

#NoMandatoryVaccine
#NoVaccinePassports
Jul 19, 2021 • 5 tweets • 4 min read
#NoVaccinePassports
#NoMandatoryVaccines

Magna Carta article 61 was issued in 2001 Strawman documentary is worth watching which explains your legal fiction / corporate / slave name

Jul 12, 2021 • 6 tweets • 6 min read
@JujuliaGrace @EveryDoctorUK Please include scrapping the abuse of the biospychosocial model in integrated and personalised care for all patients influenced by insurance industry @JujuliaGrace @EveryDoctorUK Abuse of this model of disability & rehab is a political choice & predominate evidence is the #pacetrial
misrepresented its data . Reduces costs 4 private joint NHS / care providers by restricting access & utilisation via trapping patients in clinical pathways like #IAPTLTCMUS
Jun 14, 2021 • 12 tweets • 8 min read
@Hltonjames A lot on reform of the NHS is on Kings Fund website

They expanded IAPT 2 longterm conditions & medically unexplained symptoms #IAPTLTCMUS

To reduce access & utilisation 4 joint private providers of health & social care - (STPs) @Hltonjames Predominate reseach for IAPT expansion “

Is the misleading research at the heart of disability cuts”- and abuse of the biospychosocial model of disability and rehabilitation - The #pacetrial

See @CBTWatch , Book CBT Tsunami by Farhad Dalal . Cash not Care by Mo Stuart
Jun 11, 2021 • 5 tweets • 3 min read
Lerner on abnormal cardiac T waves in journal.chestnet.org/article/S0012-…. #MECFS #KidswithME Lerner discovered with increasing work loads gross left ventricular dysfunction occurred. Fatigue of patients #MECFS may be related to subtle cardiac dysfunction occurring at work loads common to ordinary living. “ & that cardiac left ventricular function improved with acyclovir
Jun 11, 2021 • 15 tweets • 21 min read
@KCSteckel @davidtuller1 @MyhillNews @thestonebird @tymestrust Henderson’s study on Acyclovir and adolescence with #MECFS showing benefit pubmed.ncbi.nlm.nih.gov/24445302/ @KCSteckel @davidtuller1 @MyhillNews @thestonebird @tymestrust 2002 study by Lener showing improved left ventricular function in #MECFS with acyclovir by other it’s brand name . Not sure how brands differ pubmed.ncbi.nlm.nih.gov/12582420/