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!
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 )
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
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
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
“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”
“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.“
@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
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