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

I started this thread to help people with LONG COVID and ME / CFS due to personal experience.

I have left links to good quality health guidelines below in bold.


If you need help with treatment and management there are
good quality guides available from these links

LONG COVID - SELF MANAGEMENT GUIDE FROM WORLD HEALTH ORGANISATION

apps.who.int/iris/bitstream/handle/10665/333287/WHO-EURO-2020-855-40590-54571-eng.pdf


ME / CFS - DIAGNOSIS AND MANAGEMENT GUIDE FROM MAYO CLINIC PROCEEDINGS

www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext

CARING FOR PATIENTS WITH EXTREMELY SEVERE ME / CFS


 www.mdpi.com/2227-9032/9/10/1331/htm


The main thing to remember is to rest and never push through and over exert yourself potentially making symptoms worse.

 The overlaps and similarities between a subset of LONG COVID and ME /CFS are now established by the World Health Organisation and various medical places around the world .
Researchers for both conditions and advocacy groups are networking together.

There are good and bad elements to this , some researchers and clinics working with both conditions are in the process of being discredited due to patient harm and conflict of interest.
Meanwhile good researchers and their work are improving treatment  outcomes. New guidelines are being developed and some have recently been published with a completely new and better understanding approach to patient care.

Our family has lived with extreme disability for years due to severe ME / CFS which has forced us to do our own research on things. I have become familiar with biomedical research, discredited research, harmful clinical practice and disability rights.

As things went along in this thread, I found myself making multiple posts , so many in fact that those specific posts now form a repository of information that I have curated to be used as a resource based on our family’s experience with a view to helping others.

The posts I have made cover information on a variety of subjects, including treatment guides , clinics, health insurance, benefit claims, researchers, medical education , law , parliamentary issues. It covers developments in various countries.

My posts gradually become more clearly defined as single topics as they go along as they were not planned and have evolved .

Long story short , I have spent years researching and keeping up to date with medical , scientific and political developments including corresponding with biomedical researchers.

The subject of ME/CFS is controversial and full of conflicting information , this has also spilled over to LONG COVID

I have been especially careful in my posts with personal choice of articles , selecting ones that I feel reflect good scientific practice in addition to exposing poor research.
These specific articles are listed in the content list below based on our family’s experience of what is helpful and what is not.
These particular articles form the basis of the repository . I have today 17 October 2021 stopped adding further articles to the repository. I feel that my posts have exhausted the subject matter and there is not much more that I can add.

 Edit dated 20 October 2021
Just had to pop back in quickly to share some good news, before returning to my internet break.
NICE announce publication of new guidelines on ME / CFS next week
www.nice.org.uk/news/article/nice-announces-next-steps-for-publication-of-its-guideline-on-me-cfs
Below 4 years of documents showing it finally got to this day.
www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents

It also an open thread that contains different posts from different people reflecting their own views and experiences and perspectives.


LIST OF CONTENTS OF REPOSITORY FROM 27 JULY TO 19 NOVEMBER 2021 NOW ENDED .

PAGE 1
US DECLARES LONG COVID COVERED BY DISABILITY ACT

A mixture of initial conversational posts followed by-

METHOD OF HEALTH INSURANCE DENIAL
Some LONG COVID researchers and clinics have conflict of interest with Insurance Companies which deny illness benefits.

Some more conversational posts followed by -

US - NATIONAL INSTITUTE OF HEALTH FUND BIOBANK FOR ME CFS.
This funding was for the LONDON SCHOOL OF HYGIENE AND TROPICAL MEDICINE who are also taking an interest in LONG COVID

HEALTH INSURANCE DENIAL FOR POST VIRAL ILLNESS FROM HARVARD LAW BLOG INCLUDING LONG HAULERS COVID 19 BILL
A brilliant blog from Harvard Law discussing conflict of interest with Health Insurance Industries and LONG COVID

STANFORD MEDICINE OPENS LONG COVID CLINIC
Includes LONG COVID and ME/CFS clinic details.

USEFUL EDUCATIONAL VIDEOS FOR EMPLOYERS , SCHOOLS AND HEALTHCARE PROVIDERS
High quality informative videos to share for educational purposes.

COLLABORATION OF UK AND US AND INTERNATIONAL DOCTORS FOR LONG COVID AND ME.
Launch of a new international organisation to try and obtain best practice in this field of medicine, called DOCTORS WITH ME.

TIPS TO HELP LIVE WITH A POST VIRAL ILLNESS BASED ON OUR FAMILY’S EXPERIENCE.
General tips and advice on management suitable for ME / CFS and some subsets of LONG COVID. Rest, post - exertional malaise , equipment etc.

TIPS ON WHAT TO DO IF DISBELIEVED AND DISMISSED
ALSO MEDICAL EDUCATION COURSES TO USE FOR ME AND LONG COVID
Information on accredited continued development course on ME and LONG COVID. Educational videos suitable to give to professionals. Support groups, workarounds . Disability discrimination.Brief information on blood donation bans.

PAGE 2

DAMAGING CONSEQUENCES
Lack of support with finances, medical care, social care, family breakdown.
Also mentions implication of NICE guidelines , and millions missing protests with show of empty shoes.

THE TIMES NEWSPAPER - BREAKING NEWS.
Regarding resignation of NICE committee members working on ME/CFS.

TRANSPARENCY - THE LACK OF IT
Classified documents , parliamentary questions ,court case for release of trial data. Neuro - pathology results. Pitfalls for alternative diagnosis.

VIDEO OF PANEL OF DOCTORS DISCUSSING HOW THEY HAVE LONG COVID THEMSELVES AND STILL HAVE BEEN DISMISSED.
Interviews of their personal experiences and difficulties.

LAWYERS ADVICE ON DISABILITY INSURANCE - US BUT COULD COULD BE USED FOR OTHER COUNTRIES.
Practical advice with links on how to navigate disability and insurance system , including medical tests.

SEVERE ME DAY
A tribute to those living and passed who experience the severe end of the disease. Including an inspiring song.

HOPE AND WHY THINGS ARE CHANGING FOR THE BETTER
Medical research, networking etc.

TWITTER CONVERSATION ABOUT RECENT PRESENTATION BY NOSSCR AND HOW THEY HAVE LINKED LONG COVID TO ME CFS.
Includes conversation between Brian Vastag , former Washington Post former science reporter and person worried with LONG COVID.

Also includes link via CDC to NATIONAL INSTITUTE OF MEDICINE report covering diagnosis criteria from 2015

LONG COVID AND ME/CFS AND THE NEED FOR ALLYSHIP
Article written by US healthcare worker on her own experience of LONG COVID and her struggles with illness , and lack of support,
and damaging healthcare at clinics. Recognising medical abuse of ME patients also.

RESEARCH GOOD AND BAD
Discusses conflict of interest, research inclusion criteria, spinning of results .Then introduces Ron Davis US! and Warren Tate from New Zealand and Maureen Hanson, US as examples of a good researchers and David Tuller who exposes poor research .

MEDIA COVERAGE HOW IT CAN MAKE OR BREAK AN ILLNESS
How poor press can influence how an illness is received and the negative consequences on healthcare and general support.

SPOKE TOO SOON - I’M BACK
Conversation between 2 doctors regarding LONG COVID discrimination

ME /CFS AND LONG COVID RESEARCH REVIEW PUBLISHED IN ONE OF THE BEST MEDICAL JOURNALS IN THE WORLD - PNAS
A review tying findings together of both conditions published in a very prestigious journal.

NICE GUIDELINE ON ME /CFS STRANGELY DELAYED AGAIN
The news of this rocked the world of the ME community and as I speak it’s still an unfolding situation. Multiple posts -

Tweets , media coverage , statements from organisations , concerns and photo of Merryn Crofts (bless her heart )and her inquest.

LONG COVID study for children and ethical concerns about harm and conflict of interest.

MEDIA HEADLINES OF NICE GUIDELINE DELAY

MEDIA SOURCE QUOTES FROM PEOPLE WHO HAVE A CONFLICT OF INTEREST IN NICE GUIDELINE PUBLICATION DELAY
Lack of ethics and patient harm involved.

THINGS GOING ON TO CHALLENGE DELAY OF NICE GUIDELINES
Petitions and correspondence and freedom of information requests.

GP JOURNAL COVERS NICE GUIDELINE DELAY
Article followed by my thoughts on legal and ethical questions

LETTER TO ROYAL COLLEGE OF PHYSICIANS FROM EXPERT WITNESS WARNS OF CONSIDERABLE PATIENT HARM AND UNETHICAL PRACTICE.
This letter regards the delay in publication of the NICE guidelines on ME/CFS and ensuing patient harm.

THE TIMES NEWSPAPER - COULD THE LINK BETWEEN LONG COVID AND ME LEAD TO A BREAKTHROUGH FOR SUFFERERS.
Article regarding sharing research between both conditions.

REPORTING HARMS
Suggestions for reporting treatments harm from CBT or GET in the absence of official recording. ( cognitive behavioural therapy or graded exercise therapy )

FREEDOM OF INFORMATION REQUESTS REGARDING NICE PUBLICATION DELAY
Current Correspondence from “what do they know site”
FOI request from 2016 regarding PACE trial and subsequent court case.
PACE data currently held at VIVLI but not yet released.

LOOKS LIKE NICE ARE TO ISSUE A FURTHER STATEMENT SHORTLY REGARDING PUBLICATION DELAY
Copy of correspondence .

PAGE 3 

 MEDICAL UNLAWFULNESS AND THE NICE ME/CFS GUIDELINE DELAY - PRESS RELEASE FROM DOCTORS WITH ME - PUBLISHED IN PHARMIWEB

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

 WHY IS HEAD OF ROYAL COLLEGE OF PHYSICIANS WHO REPRESENT 40,000 DOCTORS TELLING THEM TO USE TREATMENT THAT HARMS 75% OF PEOPLE WITH ME ?
Quote By Andrew Goddard president of Royal College of physicians endorsing graded exercise and supporting pause of NICE guidelines. 
Survey presenting evidence of harm to NICE guideline committee from Oxford Brookes University showing 75% of patients harmed by graded exercise.

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

SUNDAY TIMES 22 AUG - IF WE CAN’T AGREE ON ME WE HAVE GOT NO CHANCE AGAINST LONG COVID

 SILENCING CRITICISM - PRESSURE APPLIED TO THESE DOCTORS, RESEARCHERS AND A POLITICIAN TO SILENCE THEM UP ABOUT CRITICISM OF ME RESEARCH , CBT AND GET
includes Dr Keith Geraghty, Dr David Marks, Dr James Coyne, Carol Monaghan MP, Dr David Tuller
also how this may link to current events regarding NICE guideline delay for ME and unprecedented pressure 


  STATNEWS 22 AUG - DELAY OF BRITISH CHRONIC FATIGUE SYNDROME GUIDELINES IS A SETBACK FOR PEOPLE WITH LONG COVID
By David Tuller and Steven Lubet
How this can impact US and Long Covid

 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.

 PLEA FROM ME ASSOCIATION TO WRITE TO MP - MEMBER OF PARLIAMENT REGARDING DELAY OF NICE GUIDELINE ON ME CFS.
Includes template letter

SEVEN SIGNIFICANT ORGANISATIONS PROPOSE CRITICAL CODE CHANGE TO CDC ICD -10 ,ADDRESSING LACK OF ME/CFS CASE TRACKING IN THE U.S.
“ Without action, millions of Americans' medical data will continue being mislabeled and lost, especially as Long COVID cases exponentially increase”

MEDICAL SCHOOL EDUCATION ON ME / CFS
Published paper in National Library of Medicine highlighting lack of education and link to accredited CPD course on ME/CFS.
Which also can be applied to LONG COVID

BBC WOMAN’S HOUR - TALKS ME/CFS AND LONG COVID AND NICE GUIDELINE DELAY
Episode 24 August interviews Dr Muirhead and Dr Strain.

 FURTHER INFORMATION FROM UK BARRISTER ON DELAY OF PUBLICATION OF NICE GUIDELINES ON ME / CFS - 25 Aug

JUST A LITTLE WHINGE
How our family feels about the NICE guideline delay for ME/CFS.

MAYO CLINIC - ESSENTIALS OF DIAGNOSIS AND MANAGEMENT
OF ME/ CFS ,
also mentions application to LONG COVID
Published on 25 August in Mayo Clinic proceedings.
It is excellent ! Mentions patient harm due to CBT and GET and PACE scandal, how energy conservation is vital to stabilise illness. 

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.

STATEMENT FROM NICE ON 27 AUGUST REGARDING DELAY OF PUBLICATION OF GUIDELINES.
Round table meeting scheduled for September and a few of my concerns about conflict of interest.

MEDICINA - AN AUDIT OF UK HOSPITAL DOCTORS KNOWLEDGE
AND EXPERIENCE OF ME / CFS
This article was published on 27th of August 2021 it reports on a survey done of hospital doctors showing that most of them do not have enough knowledge to diagnose treat or manage ME/ CFS

ON THE ROLLER COASTER NOW ...
A different more hopeful perspective on the NICE guideline delay of ME with the involvement of NHSEI who can possibly intervene and help implement things.
 
OPEN LETTER FROM DOCTORS WITH ME SENT TO NICE, HOUSE OF COMMONS, MEDICINE AND HEALTHCARE
PRODUCT REGULATORY AGENCY, DEPT OF HEALTH AND SOCIAL CARE.
regarding ME and LONG COVID , patient harm, professional retribution, unlawfulness and NICE guideline for ME/CFS

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

 HSC CLINICAL EDUCATION CENTRE - EDUCATIONAL COURSES
DURING SEPTEMBER AND OCTOBER ON ME/CFS
Organised by Joan McParland of the Hope 4 ME and Fibro Northern Ireland. Featuring speakers
Professor Brian Hughes, professor Mark Van Ness,
Dr Michelle Bull , Dr Nina Muirhead, Dr Nigel Speight , Nurse Carline Kingdon.

 NEW ZEALAND - ACCREDITED MEDICAL EDUCATION COURSE ON ME / CFS
designed for GP’S to assist with diagnosis and management.

 WILFUL IGNORANCE BY MARGARET WILLIAMS
A recently written piece concerning NICE guideline delay on ME
and lawful implications for patient consent and harm, includes mention of new US based MAYO guidelines on ME too.

 A REPOSITORY OF INFORMATION CONCERNING ME / CFS
AND DOCUMENTED CONFLICT OF INTERESTS 1986 ONWARDS
By Professor Malcolm Hooper and Margaret Williams , a comprehensive library of documents.

 WORLD HEALTH ORGANISATION GUIDE ON HOW TO SELF -MANAGE AFTER COVID.
Multi page online leaflet with lots of advice on many different symptoms from breathing to pain and much more ,Including energy conservation and pacing to avoid post exertional malaise and worsening of symptoms on page 8.

GP CONFERENCE IN NEW ZEALAND , PRESENTATION CALLED “ME /CFS FROM HARM TO HELP” - AS PART OF MEDICAL EDUCATION FROM DR CATHY STEPHENSON.
includes slides and audio of presentation warning doctors of patient harms of CBT and GET and re-educating them on how to care for ME patients properly. Conference date 7 August 2021.

 PAGE 4 

BEYOND THE SYMPTOM - BIOLOGY OF FATIGUE
NIH WORKSHOP 27 AND 28 SEPTEMBER. US.
Joint effort between National Institutes of Health , Blue print for neuroscience research programme and sleep research society.
Includes several sessions on ME/CFS.

 THE SUCH FUN BAKE OFF - WITH MIRANDA HART AND JENNIE JACQUES - FOR ME/CFS AND LONG COVID.
It ends midnight today uk time !!!!! Quick , if you want to enter your photo of cake.

 LETTER TO NICE URGING THEM TO PUBLISH GUIDELINES ON ME/CFS - FROM 14 DIFFERENT COUNTRIES WITH SIGNATURES FROM 127 PROFESSIONALS

 ARTICLE - THE ATLANTIC - LONG HAULERS ARE FIGHTING FOR THEIR FUTURE - BY ED YONG
This article draws parallels with LONG COVID and ME/CFS and says how poor research and harmful treatment could jeopardise the future of people with LONG COVID. Mentions the notorious PACE trial and dangers of post- exertional malaise.

 THERE IS DESPAIR OUT THERE
A series of tweets to mark a moment in time of collective despair.
To keep for posterity to show the suffering that people with ME are going through right now.

 JUST BECAUSE ...
I have thoroughly depressed myself today so I am posting this picture of a pet piglet to cheer things up a bit, There are days when you just need to look at something lovely.

 I NEWS - ARTICLE - ATTITUDES TO LONG COVID ARE STRAIGHT OUT OF THE ME PLAYBOOK - HISTORY MUST NOT BE ALLOWED TO REPEAT ITSELF
LONG COVID and ME and how history should not repeat it self with harmful treatments and NICE guidelines on ME could influence future medical practice on LONG COVID.

UPDATE - 9 September
Professor Gillian Leng , Chief Executive of NICE announced her retirement today 9 September .
Yesterday unofficial information broke on the internet ,the independent chair of the round table on ME guidelines has been rumoured to be Dame Carol Black .

ME AUSTRALIA GROUP - FACEBOOK ARTICLE REGARDING DELAY OF NICE GUIDELINE ,UK DISCRIMINATION AND UNLAWFULNESS
includes lack of transparency in NICE round table event and why all protocols and process have not been followed.


PHYSIO OPINION - NICE ROUND TABLE ABOUT ME GUIDELINES IS A FARCE.
Tweets from a physiotherapist regarding lack of transparency in NICE round table event.

NOT KNOWING -
just what it says on the tin

 BRITISH PSYCHOLOGICAL SOCIETY CAMPAIGN TO MAKE LONG COVID A PSYCHO - SOCIAL CONDITION.
Bad news initially but since edited to update that they now have withdrawn the proposal.

 HR NEWS - ARTICLE - NHS THERAPISTS ARE PRESSURED TO EXAGGERATE SUCCESS
In addition to this article I have provided extra information on how this is tied to ME/CFS treatment and possibly implicated in the delay of publication of the new NICE guidelines on ME.

NEW LETTER TO NICE NOW SIGNED BY 150 EXPERTS AND 100 CHARITIES TOO FROM 19 COUNTRIES .
urging NICE to publish the health guidelines for ME/ CFS without further delay.

 NO - NOT THAT KIND OF LEAK
A confidential document has been released on the grounds of public interest - ME related.


NIH NEWS RELEASE 15 SEPT REGARDING NATIONWIDE LONG COVID RESEARCH ( US )
Pooling and sharing different sorts of data including tissue samples.

 PROTEST OUTSIDE NICE HQ ASKING FOR NICE GUIDELINES TO BE PUBLISHED ON ME / CFS WITHOUT DELAY.
Some words, photographs and moving pleas from patients from their homes as they are too ill to attend

 NICE HAVE CONFIRMED THAT CAROLE BLACK WILL CHAIR THE ROUNDTABLE MEETING ON OCTOBER 18 REGARDING THE DELAYED PUBLICATION OF NEW GUIDELINES FOR ME/CFS
A choice which raises concerns over conflict of interest.

LONG COVID GROUP EXPRESSES CONCERN OVER DELAY IN PUBLISHING NEW GUIDELINES ON ME/CFS
due to over lapping conditions and adversely affecting care and treatment guidelines for LONG COVID

BISCUITS
Biscuit humour relating to NICE guideline delay and treatments of CBT and GET - ME/CFS related

 DOCTORS WITH ME ISSUE FURTHER STATEMENT REGARDING ROUNDTABLE MEETING CONCERNING NICE GUIDELINES ON ME/CFS.
They share concerns of vested interests , patient harm and discrimination in the UK for people with ME and include LONG COVID as well.

 LONG COVID ADVICE FROM WORLD PHYSIO
Brilliant stuff - here is an information poster from World Physio regarding warnings about post exertional symptom exacerbation / malaise for people with LONG COVID.

 DOCTORS IN IRELAND URGED TO LOOK OUT FOR CHRONIC FATIGUE SYNDROME IN LONG COVID PATIENTS.
A news article warning LONG COVID clinics GP’s to look for ME/CFS in their LONG COVID patients as exercise treatment can cause harm. Lecture at Trinity College.

 STATEMENT FROM MORTEN GROUP , OXFORD , CRITICISING
NICE GUIDELINE DELAY ON ME /CFS AND RAISE CONCERNS RE PATIENT HARM.
Dr Karl Morten , states that the new guideline on ME/CFS should not be delayed because of pressure from vested interests and raises concerns over patient harm.

 NORWAY - PATIENTS SEND LETTER TO NICE REGARDING DELAY OF NEW GUIDELINES FOR ME /CFS
The UK NICE guidelines affect other countries too , including Norway. They are concerned about continued patient harm with CBT and GET which is mandatory when applying for benefits in Norway .Their survey shows deterioration of nearly 6000 patients health following increased activity . GET graded exercise causes harm.

 PAGE 5

SWEDEN - 13 OCTOBER - CONFERENCE VIA ZOOM FEATURING LECTURE ABOUT LONG COVID AND ME / CFS by RESEARCHER JONAS BERQUIST
The conference is free to view via zoom on October 13 .

 LEGAL ACTION HAS STARTED -JUDICIAL REVIEW AGAINST NICE HAS BEGUN IT’S FIRST STEPS.
on 1 October a solicitor and civil litigator Peter Todd announced he has sent a legal letter to NICE regarding the delay of the publication of NICE guidelines on ME/CFS with a view to High Court intervention if necessary and judicial review.

 CHILDREN WITH LONG COVID - A UK CLINICAL TRIAL CALLED CLoCK .
This post is about a clinical trial which has begun to raise alarm bells for parents who have children with long Covid.

ABOVE INCLUDES , LEGAL BATTLE TO CHALLENGE CURRENT PRACTICE OF PATIENT HARM OF GRADED EXERCISE FOR PEOPLE WITH ME AND THE DELAY OF PUBLICATION OF 2021 NEW SAFER GUIDELINES FROM NICE

 COPY OF LEGAL LETTER TO NICE FROM PETER TODD OF SCOTT MONCRIEFF AND ASSOCIATES REGARDING DELAY OF PUBLICATION OF NICE GUIDELINES ON ME / CFS 2021
Copy of redacted correspondence , edited update of 6 october now included.

 THE TALE OF THE PREVIOUS JUDICIAL REVIEW ON ME / CFS
Covering the 2007 to 2009 outcome of the previous judicial review on NICE guidelines on ME/CFS.

 UPDATE 6 OCTOBER - LEGAL ACTION AGAIST NICE ABOUT DELAY OF NICE GUIDELINES ON ME / CFS
The solicitor Peter Todd from law firm Scott Moncrieff has released further news today on the legal battle against NICE delaying the publication of the new safer guidelines on ME / CFS.

 CARING FOR THE PATIENT WITH SEVERE OR VERY SEVERE MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME
www.mdpi.com/2227-9032/9/10/1331/htm
This is a brand new medical paper on how to care for patients with extremely severe ME / CFS.

FURTHER UPDATE WITH LEGAL CORRESPONDENCE REGARDING DELAY IN PUBLISHING NICE GUIDELINES ON ME / CFS
INVOLVING PETER TODD FROM SCOTT MONCRIEFF AND SOLICITORS REPRESENTING NICE CALLED DAC BEACHCROFT
Dated 6 and 7 October

 CORRESPONDENCE BETWEEN NICE AND LOU CORSIUS FROM THE NETHERLANDS REGARDING DELAY OF THE PUBLICATION OF NEW NICE GUIDELINES ON ME / CFS
Lou Corsius has left a link on his twitter account to this reply he received on 5 Oct from NICE . He is a member of the Dutch health steering committee called ZonMw.

 THE DAUGHTER OF LOU CORSIUS - ILL WITH ME / CFS FOR 20 YEARS.
This is why his correspondence with NICE regarding the delay of the new guidelines on ME / CFS matters so much.

 UPDATE ON LEGAL BATTLE WITH NICE DATED 8 OCTOBER
REGARDING DELAY OF PUBLICATION OF NEW SAFER GUIDELINES ON ME / CFS
Peter Todd , solicitor from Scott Moncrieff has announced on twitter today that his claimant has been granted legal aid.
Then he says he is preparing paperwork for the High Court, with QC ( Queen’s Counsel ) Ian Wise from Monckton.

  WORLD HEALTH ORGANISATION - A CLINICAL CASE DEFINITION OF POST COVID 19
Published 6 October

 MEDIA COVERAGE OF LEGAL BATTLE WITH NICE REGARDING DELAY OF PUBLICATION OF ME / CFS GUIDELINES -
NEWS COVERED IN THE i , PUBLISHED 9 OCTOBER
“ME PATIENT GOES TO COURT IN ROW OVER EXERCISE THERAPY FOR CHRONIC FATIGUE SYNDROME”
inews.co.uk/news/health/me-patient-court-row-exercise-therapy-chronic-fatigue-1239380
Oooh ! This is exciting ! It has made the news !
(Several previous posts about this subject of this legal battle concerning the delay “pause” on the publication on NICE guidelines on ME / CFS can be found somewhere close by upthread, including legal correspondence)

 MORE MEDIA COVERAGE OF LEGAL BATTLE WITH NICE OVER DELAY OF ME / CFS GUIDELINES.
i NEWS - 11 OCT by Paul Gallagher ( follow on )
And
THE TIMES - 11 OCT
raising concerns of patient harm through graded exercise.

 WHAT MAKES GRADED EXERCISE SO HARMFUL TO PEOPLE WITH ME / CFS.
Medical research from University of Bergen , in Norway, showing cellular strain and impaired energy metabolism .

 MEDICAL NEGLECT CAN BE FATAL FOR PEOPLE WITH ME / CFS WHO ARE UNABLE TO EAT THROUGH SEVERE ILLNESS
Link to medical paper regarding life threatening malnutrition for those with severe ME/CFS and clinical neglect.
Also includes twitter conversation regarding sad deaths and ongoing legal battle with the delay of new NICE guidelines on ME.

 HOUSE OF LORDS TODAY - QUESTION ABOUT DELAY OF NICE GUIDELINES ON ME / CFS
Baroness Thornton asking why ME guidelines were delayed , asked could it be due to vested medical interests and LONG COVID ?
Said daughter of constituent bedbound following graded exercise.

 WRITTEN TRANSCRIPT OF HOUSE OF LORDS SESSION FROM OCTOBER 12 DISCUSSING DELAY OF NEW GUIDELINE FOR ME /CFS .
link to the official Hansard transcript of what was said and by whom .

 NICE RELEASES AGENDA FOR UPCOMING ROUNDTABLE MEETING ON OCTOBER 18 REGARDING DELAY OF PUBLICATION OF NEW ME / CFS GUIDELINES.
Link to announcement and some background information.

 ROUNDTABLE 18 OCTOBER - ATTENDEES AND FURTHER AGENDA
NICE just released these details ahead of the meeting next week.

 BLOOMBERG LAW ARTICLE OCTOBER 14
“LONG COVID DOUBLES BURDEN OF MYSTERY ILLNESS FEW DOCTORS TREAT “
An article discussing LONG COVID and ME / CFS and healthcare inadequacies .

 FORD FOUNDATION LAUNCHES FIRST EVER U.S DISABILITY RIGHTS PROGRAM.
Includes grant award to ME action for ME /CFS and LONG COVID

 UPDATE ON LEGAL BATTLE WITH NICE WITH REGARD TO DELAY IN PUBLISHING NEW GUIDELINES ON ME / CFS
Dated 15 OCTOBER
Peter Todd, the solicitor from Scott Moncrieff acting on behalf of an ME patient has announced that instead of presenting the claim today , it will be delayed until after the roundtable meeting taking place on 18 October.

FEELINGS
Just a little waffle to pass the the time.

 DR BEN MARSH - PAEDIATRICIAN -WRITES LETTER OF CONCERN TO ROYAL COLLEGE OF PAEDIATRICS AND CHILD HEALTH REGARDING THEIR CONCERNING BEHAVIOUR IN RESPONSE TO NEW NICE GUIDELINES DELAY ON ME / CFS.
Letter dated 12 October asking why they caused the delay in publishing the new guidelines.

 AUSTRALIA - ABC NEWS ARTICLE ABOUT LONG COVID AND ME / CFS
A good article, it describes several people’s personal experience of LONG COVID and mentions similarity to ME/ CFS.

PAGE 6

 LONG COVID PHYSIO - OPEN LETTER TO NICE ABOUT GUIDELINES FOR ME/CFS
A letter from LONG COVID organisations around the world urging NICE not to delay publishing the new guidelines on ME/CFS myalgic encephalomyelitis / chronic fatigue symptoms which has overlapping symptoms with LONG COVID.
Dated 16 October

 A COUPLE OF ARTICLE RECOMMENDATIONS -
USEFUL AS A QUICK OVERVIEW FOR LONG COVID AND ME / CFS
Links to 2 different style articles , one is science focused and more in depth, the other is person focused and describes personal experiences.
The main subject for these articles is LONG COVID but the similarity with ME / CFS is also featured in both articles 

 OUR PERSONAL FAMILY HISTORY WITH ME / CFS
Some details of our years with ME/CFS and why it is so important to get that new guideline published for ME / CFS providing accurate up to date information and improved patient care to end the years of harmful treatment and misleading information.

NEW NICE GUIDELINES ON ME CFS NOW PUBLISHED 29 OCTOBER 2021
link and overview including details of loopholes where patient harm could still continue.

 PART 1 - HEALTHCARE PATHWAY FOR ME / CFS NOW AVAILABLE.
WHICH IS VERY USEFUL FOR PATIENTS TO BE INFORMED ABOUT PROCEDURE DURING DOCTORS APPOINTMENTS
PART 2 - DOCTORS ORGANISATIONS ISSUE JOINT STATEMENT DATED 29 OCTOBER DISAGREEING WITH NEW GUIDELINES, (INCLUDES STAKEHOLDER COMMENTS FOR EXTRA CONTEXT)
( LONG COVID NEWS HERE ASWELL )
WARNINGS FOR CONTINUED PATIENT HARM BY DR SPEIGHT - GOOD GUY.
PART 3 - POTENTIAL FOR PUBLIC INQUIRY / GOVERNMENT INVESTIGATION
This is a long post but I have written it because of ongoing developments occurring over the past 48 hours which are cause for concern. I hope that this post will provide people with sufficient information to be aware of potential future difficulties covering pitfalls, loopholes, dangers, rights, and entitlements. Being well informed can make all the difference between receiving right and wrong care which could in turn affect disease severity and duration.

 BULLYING OF NICE GUIDELINE COMMITTEE MEMBERS FOR ME/CFS - CONCERN THAT PATIENTS HEALTHCARE PATHWAYS MAY NOT BE FOLLOWED ALLOWING HARM.
Member of NICE guideline committee spills beans on inside bullying and lobbying to prevent new safer guidelines from being published.

 UK GOVERNMENT MINISTER STATES THAT THERE ARE NO PLANS TO RECORD HARMS OF GRADED EXERCISE FOR ME/ CFS
Parliamentary question tabled 3 November 2021

 VERY SAD NEWS -
Maeve , the daughter of Sean O’Neill , (senior writer of the Times ) has died of severe ME aged 27 having been ill since 14 years old. 

 PETITIONS LAUNCHED TO RECORD NON-PHARMACOLOGICAL HARMS
Links to 2 petitions, especially useful for patients with ME / CFS and LONG COVID to have an official reporting method set up for potential harm from non - pharma treatments that worsen their illness.



END OF REPOSITORY - TAKING A BREAK.




Here is how it began ...





Good news !

US announces Long Covid sufferers are to be given disability protection under law. This should provide extra rights with employment, education and healthcare.

Related to this pea thread below.

2peasrefugees.boards.net/thread/122893/long-covid-why-ignored-serious?page=2

edition.cnn.com/2021/07/26/politics/biden-resources-long-covid/index.html
Above is a CNN news article covering this from yesterday.

a bit more detail here
www.cnbc.com/2021/07/26/long-covid-biden-says-some-qualify-for-federal-disability-resources.html

some quotes 

These protections include providing additional time on a test for students with difficulty concentrating, providing refueling assistance at a gas station for a customer with joint or muscle pain, and allowing a person with dizziness to be accompanied by a service animal. Businesses and state or local governments may also be required to make other modifications that accommodate a person’s long Covid symptoms that rise to a disability.

The Biden administration also released new guidance that addresses the needs of children with long Covid who may have disabilities. The guidance, issued under the Department of Education, outlines how schools and public agencies can provide services to children and students with long Covid that rises to a disability.