LONG COVID + ME/CFS disability LAW + Insurance + Clinics

ARTICLE IN THE TIMES - WILL THEY BELIEVE US NOW ?
LONG COVID OFFERS HOPE FOR ME SUFFERERS

epaper.thetimes.co.uk/the-times/20210821/282054805113179





What stood out to me from  the article was Dr David Strain who leads the British Medical Association response to Long Covid and his view that ME is a very similar condition, and how he is frustrated with medical scepticism that it is a psychological rather than a physical illness.

it was also interesting to read of Claire Higham’s poor experience of her visit to the Long Covid clinic
reminiscent of an ME clinic, which already have bad reputations.

UK BARRISTER TALKS ABOUT LEGAL IMPLICATIONS OF DELAY OF PUBLICATION OF NICE GUIDELINES ON ME / CFS

valerieeliotsmith.com/2021/08/20/nice-contemptuous-and-contemptible-the-case-for-community-publication-of-the-paused-guideline-for-me-cfs/













Oddly enough there was a judicial review in 2007 when the ME guidelines first came out. Patients vs NICE. Patients lost , but were querying treatments even then. I have a feeling that 2 of the 3 patients that brought the case have since died sadly.

On another side note , a day or so ago, Charles Shepherd , medical advisor to the ME Association has said some impressive law firms have contacted him with a view to helping pro-bono. He continued to say that in 3 or 4 weeks time it would become clearer whether or not potential legal action would be under consideration.
( apparently this was on the ME Association Facebook page in answer to a question from someone called Pete , I do not belong to Facebook myself )

He went on to say due to weather forecasting rain in the Cotswolds he would be answering questions over the weekend.

It it is all getting a bit heavy so - Here is a picture of the Cotswolds on a sunnier day

 

SILENCING CRITICISM - PRESSURE APPLIED TO THESE DOCTORS, RESEARCHERS AND A POLITICIAN TO SILENCE THEM ABOUT CRITICISING ME RESEARCH , CBT AND GET
(And how this applies to current events regarding delay of NICE guidelines on ME)

There is a concerted effort by a group of people and researchers with vested interests to stifle criticism of CBT and GET cognitive behavioural therapy and graded exercise therapy . They apply pressure.

Within the past week , pressure was applied to stop the new NICE guidelines going ahead for patients with ME.
The new national health guidelines were due to abandon ‘treatments’ of CBT and GET due to patient harm.
That event was so newsworthy , because it was unprecedented,
it was covered by most national newspapers, and featured on BBC news and Radio.

Now other people are seeing what people with ME have been witnessing for years.

This is not the first time that pressure has been applied to prevent publication or discussion. Here a just a few examples.

Dr keith Geraghty’s university employers were also pressurised whilst he was trying to get research papers published regarding mistreatment of patients with ME and flaws of CBT and GET.
He tweeted about a few years ago. W and S as documented in link below refers to PACE researcher Peter White and Michael Sharpe

opposingmega.wordpress.com/2016/11/19/dr-keith-geraghty-comments-on-opposing-mega/

 

Dr David Marks , Editor of Journal of Health psychology , also had pressure applied .
It concerned publication of a special edition of the Journal of Health Psychology dedicated to an expose on the PACE trial and the harmful treatments of CBT and GET.
They had to release the embargo early prior to publication to ensure that it went ahead . See James Coyne’s account of this below.

journals.sagepub.com/toc/hpq/22/9

Dr James Coyne, Health Psychologist, also encountered problems when he blogged about it on PLOS - MIND THE BRAIN.
PLOS stands for Public Library of Science.

m.facebook.com/james.c.coyne/posts/its-been-a-wild-72-hours-publication-of-the-special-issue-of-journal-of-health-p/10214635365384655/

 

 
 

Carol Monaghan , a UK Member of Parliament also had pressure applied.The letter she received was from Michael Sharpe , one of the PACE researchers with serious conflict of interest. He wrote to her to before the parliamentary Westminster Hall debate held on 21 June 2018 on ME treatment and research.

hansard.parliament.uk/Commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch

 


Many medical professionals and scientists have tried to speak out about the PACE trial ,risking their careers to do so. Here is an open letter sent to the Lancet ( who published PACE ) signed by over a hundred professionals from around the world calling for an investigation.

www.virology.ws/2018/08/13/trial-by-error-open-letter-to-the-lancet-version-3-0/

Dr David Tuller, Public Health Journalist from Berkeley University , California, is considered a hero by the UK ME community. He also wrote of his experience by the same group of UK researchers , particularly Esther Crawley who tried to silence his criticism by contacting his employers. Never the less he has continued , with his expose pieces on Virology Blog, professional medical articles , and letters to Medical Journals and ethic committees to try and correct bad research practice and misconduct.

www.virology.ws/2017/11/29/trial-by-error-the-crawley-chronicles-continued/

 


This brings us round to present events.
Is it a coincidence that a close contact of Esther Crawley ( who tried to silence David Tuller above ) is Terence Stephenson, Royal College of Paediatrics and Child Health ?
The RCPCH above recently spoke to the newspapers on how they oppose the new NICE guidelines on ME. Bearing in mind the new guidelines wish to stop CBT and GET due to patient harm.
Both Esther Crawley and Terence Stephenson are leading a clinical trial which wishes to use CBT and GET on children with LONG COVID. The trial has cost over a million pounds already.

assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/977177/Children_and_young_people_with_Long_Covid__CLoCK_.pdf

In general , by sweeping LONG COVID under the carpet in much the same way that has happened to ME. Cost savings could perhaps run into millions or even billions world wide


Dr David Tuller (HERO ) has just co written a piece with Steve Lubet ( professor of law ) for Stat News .

Here is David Tuller

 

CANADA - THE LAWYER’S DAILY - THE COMING BATTLES OVER LONG HAUL COVID 19 AND LONG TERM DISABILITY - 23 AUG

Discusses difficulty with obtaining health insurance coverage for LONG COVID and how they have been here before with ME / CFS
Also mentions British Medical Journal BMJ.

www.thelawyersdaily.ca/articles/29145/the-coming-battles-over-long-haul-covid-19-and-long-term-disability


 

 
SEVEN SIGNIFICANT ORGANISATIONS PROPOSE CRITICAL CODE CHANGE TO CDC ICD -10 ,ADDRESSING LACK OF ME/CFS CASE TRACKING IN THE U.S.
Also mentions LONG COVID

“ Without action, millions of Americans' medical data will continue being mislabeled and lost, especially as Long COVID cases exponentially increase”

www.prnewswire.com/news-releases/seven-significant-organizations-propose-critical-code-change-to-cdcs-icd-10-addressing-catastrophic-lack-of-mecfs-case-tracking-in-the-us-301360782.html

 

BBC WOMEN’S HOUR - TALKS ME/CFS AND LONG COVID AND NICE GUIDELINE DELAY
Episode 24 August interviews Dr Muirhead ( see above post ) and Dr Strain.

www.bbc.co.uk/programmes/m000yyqb?at_custom2=twitter&at_custom3=%40BBCWomansHour&at_medium=custom7&at_campaign=64&at_custom1=%5Bpost+type%5D&at_custom4=F6D9320A-0429-11EC-BB47-21230EDC252D

 





( see previous post above ,Dr Nina Muirhead and Dr Ben Marsh both have ME themselves and co-authored a paper called ‘Medical School Education on ME/CFS on pubmed National Library of Medicine )

JUST A LITTLE WHINGE

Imagine being sat in a Doctor’s waiting room since 2007 to the present day ...
Waiting for your turn to be seen ...
14 years later - you are still sat there waiting, you are still ill, your seat is getting really uncomfortable ...
Other patients who don’t have ME come and go...
Then finally your name has been called ...
You are told the Doctor will see you now...
You move to stand up...
Then unexpectedly the receptionist tells you the Doctor has paused all appointments for patients with ME ...
You are told there is no other information available...
You return to your seat in shock and disbelief...
The never ending wait begins again...
You have no idea if or when things will ever change.

This is how the further delay of the publication of NICE Guidelines on ME/CFS feels to my family.

At present there is no medical care for people with ME.
Currently only harmful ‘treatments’ are offered. These make people worse not better.

People with ME have been waiting and hoping for things to change
since the guidelines came first came out in 2007.
The day of 18 August 2021 was due to be the day of change.
It was supposed to be the day the harm stopped.
It was supposed to be a better beginning.

People with ME/CFS are affected by this decision every hour , every day, every week, every month, and have been for years.

Illness remains constant .

ME Charities actually circulated helpline telephone numbers to offer patients extra support, knowing that this open ended delay is causing so much distress to people with ME and their families.




It was all so close, within reach , then snatched way.

Like many families with ME , I am trying to find out more , to see if there is any light at the end of the tunnel.

First thing in the morning and last thing at night, I find myself searching ...

Searching for crumbs...

SOCIAL SCIENCE SPACE - IS THE SUNK COST FALLACY FIRST DOING HARM IN CHRONIC FATIGUE SYNDROME
An article ( published 25 AUG )written by Steve Lubet , Professor of Law, US concerning difference in US and UK treatment of ME/CFS including patient harm and NICE guideline delay.

Another nice read today , whilst having a cup of tea and a flapjack.

Steve Lubet not only talks about the difference between the UK and US approach to treating ME but talks about the press quotes given by opposers of the new NICE guidelines used in recent news articles covering the publication delay . He too feels that “First do no harm” is important.
( I also spoke of this in a previous post somewhere upthread.)

He also covers how the NICE guidelines thoroughly graded the evidence of CBT and GET (cognitive behavioural therapy and graded exercise therapy ) and assessed them to be of very low quality.

www.socialsciencespace.com/2021/08/is-the-sunk-cost-fallacy-first-doing-harm-in-chronic-fatigue-syndrome/

MEDICINA - An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis.
Published 27 August.

www.mdpi.com/1648-9144/57/9/885

This was published today , it shows the need for better more accurate medical education. Most of the doctors surveyed said they did not know how to diagnose , treat, or manage ME.
They also said they thought it was partly psychological.

OPEN LETTER FROM DOCTORS WITH ME SENT TO HOUSE OF COMMONS , NICE , DEPT OF HEALTH AND SOCIAL CARE AND
MEDICINES AND HEALTHCARE REGULATORY AGENCY

The letter dated 28 August raises concerns of patient mistreatment regarding ME and LONG COVID including -

Non-pharmacological harm and means to report and record it,
Patient harm from treatments of CBT and GET,
( cognitive behavioural therapy and graded exercise therapy )
Unlawful practices,
Professional retribution,
Freedom of information requests,
NICE guideline publication delay for ME/CFS
Endorsement of US based Institute of Medicine report on ME/CFS
Endorsement of US based recent MAYO Clinical Proceedings for diagnosis and management of ME/CFS

( these are subjects which are covered in more detail in previous posts somewhere upthread )

The letter consists of two parts , the first part covers a proposal to amalgamate organisations. I have skipped over this.

The second part covers ME and LONG COVID as can be seen in the screenshots below, together with the people the letter was addressed to.

doctorswith.me/public-letter-to-dhsc-mhra-hoc-nice-call-for-a-medical-regulatory-agency/?fbclid=IwAR1jt3xr-1Ru7vHVBrh8LLjT6DSUSy6wsXxqGjZUmwyFd-RbrcHj7R7TvLM

 

PETITION TO PUBLISH NICE GUIDELINES ON ME /CFS NOW
HAS OVER 18,000 SIGNATURES !

www.change.org/p/the-national-institute-for-health-and-care-excellence-publish-the-nice-me-cfs-guideline-now

Just to say this now has over 18,000 signatures to support
the publication of new NICE guideline for ME / CFS.

 

NEW ZEALAND - ACCREDITED MEDICAL EDUCATION COURSE ON ME / CFS

This is an accredited CPD continued professional development course designed for GPs in New Zealand.

It is a good one, it recognises the importance of post exertional malaise and energy conservation also known as pacing.
(not to be confused with the notorious PACE trial )

There are 12 pages which can be viewed from this link below and include details of diagnosis and management.


static1.squarespace.com/static/5cae6a189b8fe8174438d696/t/61088ee6b71b5f76018ebed9/1627950841804/HowToTreat+MECFS+REPRINT.pdf

 

 

 A REPOSITORY OF INFORMATION CONCERNING ME / CFS
AND DOCUMENTED CONFLICT OF INTERESTS 1986 ONWARDS

This is the work of 3 people who have worked hard over the decades to help ME patients and had the courage to put together probably the most comprehensive repository of information regarding what most would consider to be medical misconduct and conflict of interest within the ME world.
Pictures showing Professor Malcolm Hooper.

www.margaretwilliams.me