1 in 3 Covid patients get neuropsychiatric problems....

Very interesting.

Of course, people in general are having more mental health issues because of the pandemic, and correlation does not necessarily equal causation.

But I think we have just seen the tip of the iceberg on the long-term effects of COVID.

Long Covid treatment proposed by Oxford researcher Michael Sharpe, recently gave a presentation to Swiss Re insurers in Feb 2021 where he showed slides of the PACE trial and indicated that he thought it would be a basis for the best treatment for long Covid.

www.swissre.com/dam/jcr:788aa287-7026-430a-8c14-f656421b6e71/swiss-re-institute-event-secondary-covid19-impacts-presentation-michael-sharpe.pdf

He forgot to mention that both the UK and US health policymakers have discredited and rejected the evidence of his trial. He also forgot to mention that 80% of patients with M.E were harmed when a separate survey was independently taken.
www.qeios.com/read/XUG3PT this is an article awaiting peer review and publication from David Marks, editor of Health Psychology, it details formal publications from a number of researchers outlining  the harms patients have suffered 
 
more harms covered here www.dialogues-mecfs.co.uk/films/graded-exercise-therapy/

Just want to apologise in advance for the length of this. So many peas and their families could be affected by long covid and poor research and treatment could result in medical harms. As Fauci has mentioned overlap with M.E / Long Covid the research mentioned above by librarylady done by UK researchers needs to be viewed in context.

Most peas should be able to find signatories from their own country in the open letter below.
I copied it all in case any peas do not like clicking on links , but once again I am sorry as to the length www.virology.ws/2018/08/13/trial-by-error-open-letter-to-the-lancet-version-3-0/

Trial By Error: Open Letter to The Lancet, version 3.0
13 August 2018 by David Tuller

By David Tuller, DrPH

Two months ago, Professor Racaniello sent Lancet editor Richard Horton an open letter about the indisputable methodological and ethical failings of the PACE trial. This was a follow-up to Virology Blog’s 2016 open letter to Dr. Horton; the new one detailed what has happened since then. Last month, I re-sent and reposted this new open letter, with organizations also signed on. Given Dr Horton’s persistent defense of a study in which 13 % of the participants had already met a key outcome threshold at baseline, it is not surprising that he has failed to respond.

Yesterday I sent the letter to The Lancet for the third time, with more individual experts and organizations adding their voices to the demand for a reassessment of the reported PACE findings. For reasons only Dr Horton can explain, he appears determined to undermine his journal’s reputation for scientific integrity with his robust support for a trial that objective observers clearly recognize as a piece of crap. PACE has caused great harm to the patient community. Dr Horton’s refusal to take appropriate corrective action has amplified that harm many times over. He and his journal have a lot to answer for.

**********

Dear Dr. Horton:

In February, 2011, The Lancet published an article called “Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomized trial.” [1] The article reported that two rehabilitative approaches, cognitive behavioural therapy (CBT) and graded exercise therapy (GET), were effective and safe treatments for chronic fatigue syndrome, also often referred to as myalgic encephalomyelitis, ME/CFS and CFS/ME. The PACE study received international attention and has had widespread influence on research, treatments prescribed for patients, and attitudes toward the illness of both the medical community and the public at large.

At the press conference promoting the Lancet paper, one of the lead investigators stated that twice as many participants in the treatment groups got “back to normal,” compared to those in the other study arms. [2] An accompanying Lancet commentary similarly claimed that these “back-to-normal” participants had met a “strict criterion for recovery.” [3]

In fact, we now know that 13 % of the participants qualified at baseline as “recovered” or “within the normal range” for one of the study’s two primary measures, self-reported physical function–even as they were simultaneously classified as disabled enough on the same measure to enter the study. [4] This anomaly, which occurred because the investigators weakened key outcome thresholds after data collection, invalidates any claims that patients “recovered” or got “back to normal.” The overlap in entry and outcome criteria is only one of the trial’s unacceptable methodological lapses.

The treatments investigated in the PACE trial were based on the hypothesis that ME/CFS patients harbor “unhelpful” convictions about having an ongoing organic disease and that the perpetuation of their devastating symptoms is the result of deconditioning. In contrast, a 2015 review from the U.S. Institute of Medicine (now the National Academy of Medicine), reported that ME/CFS is a complex, multi-system illness characterized by neurological, immunological, autonomic, and energy metabolism dysfunctions. [5] The cardinal symptom, noted the review, is a systemic intolerance to exertion; if patients exceed their available energy resources, they can suffer serious and prolonged relapses.

After The Lancet published the first PACE results, ME/CFS patients and advocates immediately pointed out major flaws. But few people outside the field took notice until the science site Virology Blog published a 15,000-word investigation by David Tuller, a public health researcher and journalist at the University of California, Berkeley, in October of 2015. [6] Subsequently, in February of 2016, many of us signed an open letter to The Lancet requesting an independent investigation of the study. [7]

Since then, much has happened:

* In August of 2016, a U.K. tribunal, citing that open letter, ordered Queen Mary University of London to release raw trial data from the PACE study, sought by Australian patient Alem Matthees in a freedom of information request so that he and others could calculate the outcomes promised in the PACE trial protocol. [8]

* Analyses of these data [9], including a study published in BMC Psychology in March [10], have confirmed what has long been argued: The PACE investigators engaged in such extensive outcome-switching that they were able to report dramatically better findings than the null or minimal results obtained under the original measures they promised in their protocol.

* The U.S. Agency for Healthcare Research and Quality (AHRQ) downgraded its recommendations for CBT and GET. [11] This downgrading occurred after the agency removed from its analysis the PACE trial and other studies using overly broad selection criteria that generated cohorts of patients with a grab-bag of fatiguing conditions. And while the PACE trial claimed that GET is safe, AHRQ found that the therapy was associated with more adverse events.

* Last summer, the U.S. Centers for Disease Control abandoned the recommendations that ME/CFS patients be treated with CBT and GET [12], having already removed references to the PACE trial. A couple of months later, the U.K. National Institute for Health and Care Excellence announced that it would pursue a full update of its 2007 guidance, citing concerns about the reliability and validity of the evidence base. [13]

* Earlier this year, a report from the Dutch Health Council recommended that GET should not be used in the Netherlands as a treatment for the illness. [14]

* In March, a group of leading American clinicians who specialize in ME/CFS unanimously agreed that the two PACE treatments are inappropriate and possibly harmful for patients with the illness and should therefore not be prescribed. [15]

Given the worldwide impact of PACE, we urge The Lancet to do what the open letter two years ago requested: commission an independent re-analysis of the individual-level trial data, with appropriate sensitivity analyses, from highly respected reviewers with extensive expertise in statistics and study design. The reviewers should be from outside the domains of psychiatry and psychological medicine and predominantly from outside the U.K. They should also be completely independent of, and have no conflicts of interests involving, the PACE investigators and the funders of the trial.

Thank you for your quick attention to this matter.

Sincerely,

Dharam V. Ablashi, DVM, MS, Dip Bact
Scientific Director
HHV-6 Foundation
Santa Barbara, California, USA
Former Senior Investigator
National Cancer Institute
National Institutes of Health
Bethesda, Maryland, USA

Lisa Alioto, JD
Vice President
Minnesota ME/CFS Alliance
Edina, Minnesota, USA

Michael Allen, PhD
Clinical Psychologist (retired)
San Francisco, California, USA

Christopher Armstrong, PhD
Bio21 Molecular Science & Biotechnology Institute
Department of Biochemistry and Molecular Biology
University of Melbourne
Melbourne, Victoria, Australia

James N. Baraniuk, MD
Professor of Medicine
Georgetown University
Washington, DC, USA

Lisa F. Barcellos, PhD
Professor of Epidemiology
School of Public Health
California Institute for Quantitative Biosciences
University of California, Berkeley
Berkeley, California, USA

Lucinda Bateman, MD
Medical Director
Bateman Horne Center
Salt Lake City, Utah, USA

Alison C. Bested, MD, FRCPC
Clinical Associate Professor
Faculty of Medicine
University of British Columbia
Vancouver, British Columbia, Canada

Charlotte Blease, PhD
Fulbright and Marie Curie Research Fellow
General Medicine and Primary Care
Beth Israel Deaconess Medical Center
Harvard Medical School
Boston, Massachusetts, USA

Molly Brown, PhD
Assistant Professor
Department of Psychology
DePaul University
Chicago, Illinois, USA

Robin Callender Smith, PhD
Professor of Media Law
Centre for Commercial Law Studies
Queen Mary University of London
Barrister and Information Rights Judge
London, England, UK

John Chia, MD
Physician and Researcher
EV Med Research
Lomita, California, USA

Lily Chu, MD, MSHS
Independent Researcher
Burlingame, California, USA

Barbara Comerford, JD
Attorney in Private practice
Specialist in Disability Law
Paramus, New Jersey, USA

Joan Crawford, CPsychol, CEng, CSci, MA, MSc
Chartered Counselling Psychologist
Chronic Pain Management Service
St Helens Hospital
St Helens, England, UK

Janet L Dafoe, PhD
Child Psychologist in Private Practice
Palo Alto, California, USA

Todd E. Davenport, PT, DPT, MPH, OCS
Professor and Program Director
Department of Physical Therapy
Thomas J. Long School of Pharmacy & Health Sciences
University of the Pacific
Stockton, California, USA
Workwell Foundation
Ripon, California, USA

Ronald W. Davis, PhD
Professor of Biochemistry and Genetics
Stanford University
Stanford, California, USA

Lucy Dechene, PhD
Professor of Mathematics (retired)
Fitchburg State University
Fitchburg, Massachusetts, USA

Simon Duffy, PhD, FRSA
Director
Centre for Welfare Reform
Sheffield, England, UK

Jonathan C.W. Edwards, MD
Emeritus Professor of Medicine
University College London
London, England, UK

Valerie Eliot Smith
Barrister and Visiting Scholar
Centre for Commercial Law Studies
Queen Mary University of London
London, England, UK

Derek Enlander, MD
Clinician in private practice
New York, New York, USA

Meredyth Evans, PhD
Clinical Psychologist and Researcher
Chicago, Illinois, USA

W.A. Faas, MD, LL.M
Insurance Physician
Researcher, Vrije Universiteit Amsterdam
Amsterdam, The Netherlands

Margaret C. Fernald, PhD
Clinical Associate
Department of Psychology
University of Maine
Orono, Maine, USA

Mary Ann Fletcher, PhD
Schemel Professor of NeuroImmune Medicine
Nova Southeastern University
Professor Emeritus
University of Miami School of Medicine
Fort Lauderdale, Florida, USA

Kenneth J. Friedman, PhD
Associate Professor of Physiology and Pharmacology (retired)
New Jersey Medical School
University of Medicine and Dentistry of New Jersey
Newark, New Jersey, USA

Robert F. Garry, PhD
Professor of Microbiology and Immunology
Tulane University School of Medicine
New Orleans, Louisiana, USA

Keith Geraghty, MPH, PhD
Honorary Research Fellow
Division of Population Health, Health Services Research & Primary Care
School of Health Sciences
University of Manchester
Manchester, England, UK

Simin Ghatineh, MSc, PhD
Biochemist
London, England, UK

Ian Gibson, PhD
Former Member of Parliament for Norwich North
Former Dean, School of Biological Sciences
University of East Anglia
Honorary Senior Lecturer and Associate Tutor
Norwich Medical School
University of East Anglia
Norwich, England, UK

Claudia Gillberg, PhD
Fellow, Centre for Welfare Reform
Sheffield, England, UK
Senior Research Associate
National Centre for Lifelong Learning
Jonkoping University
Jonkoping, Sweden

Mike Godwin, JD
Attorney and Author
Distinguished Senior Fellow
R Street Institute
Washington, DC, USA

Rebecca Goldin, PhD
Professor of Mathematics
George Mason University
Fairfax, Virginia, USA

Alan Gurwitt, MD
Clinician in Private Practice (retired)
Associate Clinical Professor
Yale Child Study Center (retired)
New Haven, Connecticut, USA
Associate Clinical Professor
University of Connecticut Dept of Psychiatry (retired)
Storrs, Connecticut, USA
Lecturer, Harvard Medical School (retired)
Boston, Massachusetts, USA

Geoffrey Hallmann, LLB, DipLegPrac
Specialist in Disability and Compensation Law (retired)
Lismore, New South Wales, Australia

Maureen Hanson, PhD
Liberty Hyde Bailey Professor
Department of Molecular Biology and Genetics
Cornell University
Ithaca, New York, USA

Malcolm Hooper, PhD, BPharm, MRIC, CChem
Emeritus Professor of Medicinal Chemistry
University of Sunderland
Tyne and Wear, England, UK

Leonard A. Jason, PhD
Professor of Psychology
DePaul University
Chicago, Illinois, USA

Daniel Kahn, MD
Professor of Radiology
Carver College of Medicine
University of Iowa Health Care
Chief, Nuclear Medicine Section
Iowa City Veteran’s Affairs Medical Center
Iowa City, Iowa, USA

Michael W. Kahn, MD
Assistant Professor of Psychiatry
Harvard Medical School
Boston, Massachusetts, USA

Keith Kahn-Harris, PhD
Associate Lecturer in Sociology
Birkbeck, University of London
London, England, UK

Jon D. Kaiser, MD
Clinical Faculty
Department of Medicine
University of California, San Francisco
San Francisco, California, USA

David L. Kaufman, MD
Center for Complex Diseases
Mountain View, California
Member, The ME/CFS Collaborative Research Center at Stanford
Palo Alto, California, USA

Betsy Keller, PhD, FACSM
Professor of Exercise & Sport Sciences
Ithaca College
Ithaca, New York, USA

Nancy Klimas MD
Director, Institute for Neuro-Immune Medicine
Nova Southeastern University
Director, Miami VA Medical Center GWI and CFS/ME Program
Miami, Florida, USA

Andreas M. Kogelnik, MD, PhD
Director
Open Medicine Institute
Mountain View, California, USA

Anthony L. Komaroff, MD
Simcox-Clifford-Higby Distinguished Professor of Medicine
Harvard Medical School
Senior Physician
Brigham and Women’s Hospital
Boston, Massachusetts, USA

Richard Kwiatek, MBBS, FRACP
Rheumatologist and Independent Researcher
Northern Adelaide Local Health Network
Adelaide, South Australia, Australia

Eliana M. Lacerda, MD, MSc, PhD
Clinical Assistant Professor
International Centre for Evidence in Disability
Faculty of Infectious and Tropical Diseases
London School of Hygiene & Tropical Medicine
London, England, UK

Charles W. Lapp, MD
Medical Director
Hunter-Hopkins Center
Charlotte, North Carolina, USA

Keith R. Laws, PhD
Professor of Neurocognitive Psychology
School of Psychology
University of Hertfordshire.
Hertfordshire, England, UK

Bruce Levin, PhD
Professor of Biostatistics
Columbia University
New York, New York, USA

Donald Lewis, MBBS, FRACGP, DRACOG
Medical Director
CFS Discovery
Melbourne, Victoria, Australia

Alan R. Light, PhD
Professor of Anesthesiology
Professor of Neurobiology and Anatomy
University of Utah
Salt Lake City, Utah, USA

Vincent C. Lombardi, PhD
Director of Research
Nevada Center for Biomedical Research
Reno, Nevada, USA

Rogier Louwen, PhD
Assistant Professor
Department of Medical Microbiology and Infectious Diseases
Erasmus University Medical Center
Rotterdam, The Netherlands

Alex Lubet, PhD
Professor of Music
Head, Interdisciplinary Graduate Group in Disability Studies
Affiliate Faculty, Center for Bioethics
Affiliate Faculty, Center for Cognitive Sciences
University of Minnesota
Minneapolis, Minnesota, USA

Steven Lubet, JD
Williams Memorial Professor of Law
Northwestern University Pritzker School of Law
Chicago, Illinois, USA

Kristin Luker, PhD
Professor of Sociology Emerita
Professor of Law Emerita
Founding Director, Center on Reproductive Rights and Justice
University of California, Berkeley
Berkeley, California, USA

Darren Lynch, MD
Northampton Integrative Medicine
Northampton, Massachusetts, USA

Countess of Mar
House of Lords
Chair, Forward-ME
London, England, UK

David F. Marks, PhD
Editor
Journal of Health Psychology
& Health Psychology Open
London, England, UK

Sonya Marshall-Gradisnik, PhD
Professor of Immunology
Co-Director, National Centre for Neuroimmunology and Emerging Diseases
Griffith University
Gold Coast, Queensland, Australia

Marlon Maus, MD, DrPH, FACS
DrPH Program Director
School of Public Health
University of California, Berkeley
Berkeley, California, USA

Neil R McGregor, BDS, MDSc, PhD
Clinical Associate Professor
Faculty of Medicine, Dentistry and Health Sciences
Bio21 Molecular Science & Biotechnology Institute
University of Melbourne.
Melbourne, Victoria, Australia

Patrick E. McKnight, PhD
Professor of Psychology
George Mason University
Fairfax, Virginia, USA

Marvin S. Medow, PhD
Professor of Pediatrics and Physiology
Chairman, New York Medical College IRB
Associate Director of The Center for Hypotension
New York Medical College
Hawthorne, New York, USA

Peter G. Medveczky, MD
Professor of Molecular Medicine
Morsani College of Medicine
University of South Florida
Tampa, Florida, USA

Jose G. Montoya, MD, FACP, FIDSA
Professor of Medicine
Division of Infectious Diseases and Geographic Medicine
Stanford University School of Medicine
Stanford, California, USA
Director, Palo Alto Medical Foundation Toxoplasma Serology Laboratory
National Reference Center for the Study and Diagnosis of Toxoplasmosis
Palo Alto, California, USA

Sarah Myhill, MBBS
Clinician in Private Practice
Knighton, Wales, UK

Luis Nacul, MD, PhD
Clinical Associate Professor
International Centre for Evidence in Disability
Faculty of Infectious and Tropical Diseases
London School of Hygiene & Tropical Medicine
London, England, UK

Zaher Nahle, PhD, MPA
Executive Director
Arthritis National Research Foundation
Long Beach, California, USA

Heidi Nicholl, PhD
Chief Executive Officer
Emerge Australia
Melbourne, Victoria, Australia

James M. Oleske, MD, MPH
François-Xavier Bagnoud Professor of Pediatrics
Senator of RBHS Research Centers, Bureaus, and Institutes
Director of Division of Pediatrics Allergy, Immunology & Infectious Diseases
Department of Pediatrics
Rutgers New Jersey Medical School
Newark, New Jersey, USA

Elisa Oltra, PhD
Professor of Molecular and Cellular Biology
Catholic University of Valencia School of Medicine
Valencia, Spain

Nigel Paneth, MD, MPH
University Distinguished Professor
Department of Epidemiology & Biostatistics
Department of Pediatrics & Human Development
College of Human Medicine
Michigan State University
East Lansing, Michigan, USA

Richard Podell, MD, MPH
Clinical Professor, Department of Family Medicine
Rutgers-Robert Wood Johnson Medical School
New Brunswick, New Jersey, USA

Nicole Porter, PhD
Psychologist in Private Practice
Rolling Ground, Wisconsin, USA

Vincent R. Racaniello, PhD
Professor of Microbiology and Immunology
Columbia University
New York, New York, USA

Arthur L. Reingold, MD
Professor of Epidemiology
University of California, Berkeley
Berkeley, California, USA

Peter C. Rowe, MD
Professor of Pediatrics
Johns Hopkins University School of Medicine
Baltimore, Maryland, USA

Michael Scott, PhD
Clinician and Researcher
Psychological Therapies Unit
Liverpool, England, UK

Sarah Selke, MB BCh BAO, CCFP
Staff Physician
Environmental Health Clinic
Women’s College Hospital
Toronto, Ontario

Charles Shepherd, MBBS
Honorary Medical Adviser to the ME Association
Buckingham, England, UK

Christopher R. Snell, PhD
Scientific Director
WorkWell Foundation
Ripon, California, USA

Nigel Speight, MA, MB BChir, FRCP, FRCPCH, DCH
Pediatrician
Durham, England, UK

Maryann Spurgin, PhD
Philosophy and Classics (retired)
Current medical writer
Shreveport, Louisiana, USA

Donald R. Staines, MBBS, MPH, FAFPHM, FAFOEM
Clinical Professor
Menzies Health Institute Queensland
Co-Director
National Centre for Neuroimmunology and Emerging Diseases
Griffith University
Gold Coast, Queensland, Australia

Philip B. Stark, PhD
Professor of Statistics
University of California, Berkeley
Berkeley, California, USA

Eleanor Stein, MD, FRCP(C)
Psychiatrist in Private Practice
Assistant Clinical Professor
University of Calgary
Calgary, Alberta, Canada

Staci Stevens, MA
Exercise Physiologist
Founder, Workwell Foundation
Ripon, California, USA

Julian Stewart, MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chairman for Patient Oriented Research
Director, Center for Hypotension
New York Medical College
Hawthorne, New York, USA

Leonie Sugarman, PhD
Emeritus Associate Professor of Applied Psychology
University of Cumbria
Carlisle, England, UK

John Swartzberg, MD
Clinical Professor Emeritus
School of Public Health
University of California, Berkeley
Berkeley, California, USA

Ronald G. Tompkins, MD, ScD
Summer M Redstone Professor of Surgery
Harvard Medical School
Boston, Massachusetts, USA

Barbara True, MD, FRACP
Private Practice
Wakefield Rheumatology
Adelaide, South Australia, Australia

Samuel Tucker, MD
Assistant Clinical Professor of Psychiatry (retired)
University of California, San Francisco
San Francisco, California, USA

David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
Berkeley, California, USA

Rosemary A. Underhill, MBBS, MRCOG, FRCSE
Physician, Independent Researcher
Palm Coast, Florida, USA

Derya Unutmaz, MD
Professor
The Jackson Laboratory for Genomic Medicine
Farmington, Connecticut, USA

A.M. Uyttersprot, MD
Neuropsychiatrist
AZ Jan Portaels
Vilvoorde, Belgium

Rosamund Vallings, MNZM, MBBS
General Practitioner
Auckland, New Zealand

Linda van Campen, MD
Cardiologist
Stichting Cardiozorg
Hoofddorp, The Netherlands

Mark VanNess, PhD
Professor of Health, Exercise & Sports Sciences
University of the Pacific
Stockton, California, USA
Workwell Foundation
Ripon, California, USA

Mark Vink, MD
Family Physician
Soerabaja Research Center
Amsterdam, The Netherlands

Frans Visser, MD
Cardiologist
Stichting Cardiozorg
Hoofddorp, The Netherlands

Tony Ward, MA (Hons), PhD, DipClinPsyc
Registered Clinical Psychologist
Professor of Clinical Psychology
School of Psychology
Victoria University of Wellington
Wellington, New Zealand
Adjunct Professor, School of Psychology
University of Birmingham
Birmingham, England, UK
Adjunct Professor, School of Psychology
University of Kent
Canterbury, England, UK

William Weir, FRCP
Infectious Disease Consultant
London, England, UK

John Whiting, MD
Specialist Physician in Private Practice
Brisbane, Queensland, Australia

Sadie Whittaker, PhD
Chief Scientific Officer
Solve ME/CFS Initiative
Los Angeles, California, USA

Carolyn Wilshire, PhD
Senior Lecturer
School of Psychology
Victoria University of Wellington
Wellington, New Zealand

Marcie Zinn, PhD
Cognitive Neuroscience and Data Science
Center for Community Research
DePaul University
Chicago, Illinois, USA
Associate Editor, BMC Journal of Translational Medicine

__________

Members of Parliament

Sir Edward Davey MP
Kingston and Surbiton, England, UK

David Drew MP
Stroud, England, UK

Patricia Gibson MP
North Ayrshire and Arran, Scotland, UK

Mary Glindon MP
North Tyneside, England, UK

Sandy Martin MP
Ipswich, England, UK

Carol Monaghan MP
Glasgow North West, Scotland, UK

Nicky Morgan MP
Loughborough, England, UK

Alex Sobel MP
Leeds North West, England, UK

Graham Stringer MP
Blackley and Broughton, England, UK

Stephen Timms MP
East Ham, England, UK

__________

Patient/Advocacy Organizations

25% ME GROUP
Support for severe ME sufferers
UK

Action CND
Canada

Action for ME
UK

American ME and CFS Society
USA

Associated New Zealand ME Society
New Zealand

Bury and Bolton ME/CFS & Fibromyalgia Support Group
UK

Chester MESH (ME self-help) group
Chester, UK

Dr Sarah Myhill’s MAIMES [Medical Abuse In ME Sufferers] Campaign
UK

Emerge Australia
Australia

European ME Alliance:

Belgium ME/CFS Association
Belgium

Research ME-CFS.CZ
Czech Republic

ME Foreningen
Denmark

Suomen CFS-Yhdistys
Finland

Fatigatio e.V.
Germany

Het Alternatief
Netherlands

Hope 4 ME & Fibro Northern Ireland
UK

Icelandic ME Association
Iceland

Irish ME Trust
Ireland

Associazione CFS Onlus-Veneto
Italy

Norges ME-forening
Norway

Liga SFC
Spain

Riksföreningen för ME-patienter
Sweden

Verein ME/CFS Schweiz
Switzerland

Invest in ME Research
UK

German Association for ME/CFS
Deutsche Gesellschaft für ME/CFS e.V.
Germany

Group ME – The Hague/Dutch Citizens’ Initiative Recognize ME
The Netherlands

Irish ME/CFS Association
Ireland

Leeds ME Network
UK

Lost Voices Stiftung (Fondation)
Hannover/ Germany

Massachusetts CFIDS/ME & FM Association
USA

#MEAction Network:

#MEAction USA

#MEAction UK

#MEAction Scotland

#MEAction Australia

ME Advocates Ireland
Ireland

ME Association
UK

ME North East
UK

ME Research UK
UK

ME Victoria
Canada

ME/CFS (Australia) Ltd
Australia

ME/CFS and Lyme Association of WA, Inc.
Australia

ME/CFS Australia (SA), Inc.
Australia

ME/CVS Stichting Nederland
Netherlands

ME/CVS Vereniging
Netherlands

ME/FM Myalgic Encephalomyelitis and Fibromyalgia Society of British Columbia
Canada

Millions Missing Canada
Canada

Minnesota ME/CFS Alliance
USA

National CFIDS Foundation, Inc.
USA

National ME/FM Action Network
Canada

New Jersey ME/CFS Association, Inc.
USA

Norfolk & Suffolk ME Patient/Carer Group
UK

North London ME Network
UK

Nottingham ME Support Group
UK

OMEGA (Oxfordshire ME Group for Action)
UK

Open Medicine Foundation
USA

Pandora Org
USA

Phoenix Rising
International membership representing many countries

Research ME-CFS.CZ
Czech Republic

Science For ME
International membership representing many countries

Sheffield ME and Fibromyalgia Group
UK

Simmaron Research Foundation
USA

Solve ME/CFS Initiative
USA

Steungroep ME en Arbeidsongeschiktheid
The Netherlands

Suomen lääketieteellinen ME/CFS-yhdistys ry
Finland

Tymes Trust (The Young ME Sufferers Trust)
UK

Wake-Up Call Beweging vzw (movement)
Belgium

WAMES (Welsh Association of ME & CFS Support)
Wales, UK

Wisconsin ME and CFS Association
USA

York ME Community
UK

Anecdotally, we are seeing this in our home. My 18 year old daughter was your basic, average, a little neurotic but not depressed, excited to be going to college, kid. Post-covid, she's depressed, anxious, brain fogged, fatigued and struggling emotionally. It's gotten a little better over time and we're hoping her vaccine (shot one yesterday) will help her continue to improve. We are SO lucky we have good insurance and she's been receiving excellent care from her GP and specialists.

But people, this isn't anything to be fucked with. Get your vaccines and stop dicking around.

Peabay, there was just an article in the NYT (I think, I don't have it now, but it was a reputable source) that talked about lingering symptoms disappearing after full vaccination. I hope that will be the case with your daughter!

I read that article. It is some very welcome good news.

I think those are excellent questions. 

In answer to Dotty’s question , Oxford University played a pivotal role in the poor research , with their researcher called Michael Sharpe. The reason this is important is because he has influence with Long Covid and recently gave a presentation to SWISS RE about it. 

The PACE trial lead author is Peter White form Queen Mary University of London however
Michael Sharpe from St Cross College , Oxford University is one of the principal authors of the PACE TRIAL
he’s actually the author of the Oxford criteria with their poor definition of M.E. 

Below I copied a header from the Lancet showing his involvement



The Lancet Psychiatry
Log in

ARTICLES| VOLUME 2, ISSUE 12, P1067-1074, DECEMBER 01, 2015
Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial

Prof Michael Sharpe, MD †
Kimberley A Goldsmith, PhD †
Prof Anthony L Johnson, PhD
Prof Trudie Chalder, PhD
Jane Walker, PhD
Prof Peter D White, MD
Show footnotes
Published:October 27, 2015DOI:https://doi.org/10.1016/S2215-0366(15)00317-X
PlumX Metrics

Summary

Background

The PACE trial found that, when added to specialist medical care (SMC), cognitive behavioural therapy (CBT), or graded exercise therapy (GET) were superior to adaptive pacing therapy (APT) or SMC alone in improving fatigue and physical functioning in people with chronic fatigue syndrome 1 year after randomisation. In this pre-specified follow-up study, we aimed to assess additional treatments received after the trial and investigate long-term outcomes (at least 2 years after randomisation) within and between original treatment groups in those originally included in the PACE trial.

END

edited for clarity and to untag Dotty

This post is very important for people with long covid, especially If they depend on heath insurance , or are no longer able to work. 

The influence of Michael Sharpe as you can see below from Oxford University is already permeating the insurance industry for Long Covid , in particular SWISS RE. The link takes you to his presentation dated Feb 2021. Below is a short extract that I have copied.

Post-COVID-19 syndrome (long-COVID)
Michael Sharpe MA MD FRCP FRCPsych Professor of Psychological Medicine
University of Oxford & Oxford University Hospitals

Summary of possible causes of Post-COVID syndrome

Biological

Organ pathology and immunology

Physiological changes such as dysautonomia

Psychological and behavioural

Fear, focussing on symptoms anxiety and depression

Coping behaviour

Social

Misinformation/ online and press and iatrogenesis

Social, interpersonal and employment issues

At present the best treatment is psychologically informed rehabilitation

END

www.swissre.com/dam/jcr:788aa287-7026-430a-8c14-f656421b6e71/swiss-re-institute-event-secondary-covid19-impacts-presentation-michael-sharpe.

Lettuce back again.

 The above link takes you to his presentation about Long Covid to Swiss Re, it is extremely ironic that he boasts about his role and talks about the PACE trial and how it is the best treatment for Long Covid.
Naturally he forgets to inform the insurance company how the PACE trial has now been completely discredited and rejected by US and UK health policy makers . He also forgot to tell them that his evidence does not even pass an acceptable standard and is considered either low or very low quality. In a completely unbelievable twist he also warns them against relying on bad science. It is surreal.

I hope that long Covid people will never have to experience the hardship that people with ME/CFS have and that history will not repeat itself . Many people have raised concerns regarding medical neglect and medical harm . Concerns have also been raised in parliament regarding these researchers motives in denying disability and insurance claims and their conflict of interest working with UNUM , Swiss RE, and DWP , the dept of work and pensions ( uk government dept ).

hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME



One of the current chairs of the NICE guideline committee comes from a palliative care specialism and both her and Peter Barry , the other chair, have both expressed shock at the way patients with M.E have been mistreated in the UK before now.

This is a statement from him 
Peter Barry, Consultant Paediatric Intensivist, University Hospitals of Leicester and chair of the guideline committee, said:


“This guideline reinforces the legitimacy of this biomedical disease and aims to reduce the disbelief and stigma felt by people with ME/CFS. It recognises the pressing need for training and education for health and social care practitioners in this neglected field.

“The draft guideline highlights post-exertional symptom exacerbation, including debilitating fatigue, as core to ME/CFS, so critically it recommends that graded exercise therapy should not be offered as a treatment.

“It acknowledges the profound needs of people with severe ME/CFS and their carers whose lives are hugely impacted by ME/CFS, and states that this unique patient group should be treated with respect, dignity, and empathy.”

END

edited for clarity and to untag Dotty.

But that has nothing to do with the PACE  10 years ago. Can’t understand the relevance if referring to it in connection to long term Covid. Long term COVID has far more different symptoms that the usual symptoms of ME.

in answer to Dotty’s question regarding the connection between Long Covid and M.E I have included an article detailing Dr Fauci , director of National Institute of Allergy and Infectious diseases from the US and his statement regarding their similarities below.


America’s top covid doctor turns ME/CFS into a subject for general discussion as the pandemic deepens

July 10, 2020
By Tony Britton, Fundraising and PR Manager, ME Association

In a week in which we heard that cases of Covid-19 had doubled globally in the last six weeks to 12 million, President Trump’s top medical adviser on the coronavirus crisis has been showing a respect to ME/CFS that’s never been made so public before.


Dr Anthony Fauci and President Trump
Dr Anthony Fauci, who has been striding the world pandemic stage usually in the shadow of the President, told a news conference organised by the International AIDS Society yesterday that the symptoms seen in long-haul Covid-19 recoverers resembled those seen in patients with M.E.

The CNN news channel reported the following remarks by Dr Fauci, who has been director of the National Institute of Allergy and Infectious Diseases (NIAID) since the days of President Reagan:

There is evidence that some people develop a long-term fatigue syndrome from coronavirus infections, Dr. Anthony Fauci said Thursday.

“There may well be a post-viral syndrome associated with Covid-19,” Fauci told a news conference organized by the International AIDS Society. The group is holding a Covid-19 conference as an add-on to its every-other-year AIDS meeting.

Fauci said the symptoms resemble those seen in patients with myalgic encephalomyelitis, or ME, once known as chronic fatigue syndrome.

“If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery,” Fauci said.

“There are chat groups that you just click on and see people who recovered that really do not get back to normal,” Fauci added. They report symptoms such as brain fog, difficulty concentrating and fatigue that resemble the symptoms of ME, he said.”

How #MEAction reported Dr Fauci’s comments

The M.E. advocacy group #MEAction took their quotes (below) from this YouTube of the International AIDS Society news conference– scoring more highly on their accuracy than CNN. The question and answer about ME/CFS starts at 33.21:


“If you look anecdotally there is no question that there are a considerable number of individuals who have a post-viral syndrome that really in many respects can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus….you can see people who’ve recovered who really do not get back to normal that they have things that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome.

“Brain fog, fatigue, and difficulty in concentrating so this is something we really need to seriously look at because it very well might be a post-viral syndrome associated with covid-19.”

END

edited for clarity and to untag Dotty.

Here I have copied and pasted an upcoming clinical trial which will be comparing experiences between people with Long Covid and people with M.E / CFS. The trial will involve 10,000 patients and take biological samples along the way.


clinicaltrials.gov/ct2/show/NCT04806620
Comparison of ME/CFS and Long COVID-19 Patients

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.

ClinicalTrials.gov Identifier: NCT04806620
Recruitment Status : Recruiting
First Posted : March 19, 2021
Last Update Posted : April 6, 2021
See Contacts and Locations
Sponsor:
Solve ME/CFS Initiative
Information provided by (Responsible Party):
Solve ME/CFS Initiative

Study Details Tabular ViewNo Results PostedDisclaimerHow to Read a Study Record
Study Description
Go to sections
Brief Summary:
The purpose of the You + ME Registry and Biobank is to collect clinical and patient-reported data and biological samples (e.g. blood) from people living with Myalgic Encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), people with long-COVID and control volunteers to improve understanding, diagnosis and treatment of these diseases.

Condition or disease
ME/CFS
Covid19

Detailed Description:
The You + ME Registry and Biobank is a collection of clinical and patient-reported data and biological samples (e.g. blood) from people living with Myalgic Encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), people with long-COVID and control volunteers. The patient registry collates demographic and real-world, longitudinal symptom, patient-reported outcomes, and treatment data from a global cohort into a centralized repository. The Registry will also be linked to a biobank which is a place that stores tissues, blood or other samples from participants. The combination of data and biological samples will be made available to researchers so we can: (1) improve our understanding of the natural history, epidemiology, pathogenesis, resilience/susceptibility factors, disease subsets, and treatment of ME/CFS and long-COVID using a standardized set of demographic and longitudinal data; (2) build an infrastructure and resource to support a range of future research into these diseases; (3) increase opportunities for collaboration between patients, providers, researchers, and industry.
Anyone 18 years of age and older is invited to sign up. After creating a profile and completing an informed consent via an online portal, participants fill out a series of surveys, including medical history, co-occurring conditions, symptoms, quality of life, functional status, and treatments. Participants receive email reminders to complete follow-up surveys to provide researchers with information about their health over time.
The Registry also includes a mobile tracking app co-created with the community that allows participants to monitor at minimum five core symptoms of fatigue, brain fog, unrefreshing sleep, and orthostatic intolerance (on a scale of 0: symptom absent - 4: very severe) as well as any additional symptoms of their choosing, life factors, and activity. Individuals can also capture data in narrative form using a journaling function. Participants are encouraged to capture data every 3 days if possible, but can track as often as daily.
Registry data is stored in a secure, encrypted database. Data is anonymized before being made available on a secure platform for research. Biosamples collected from participants are labeled with a coded number to protect their privacy and confidentiality.
This project is supported by Solve ME/CFS Initiative. You can learn more and sign up at youandmeregistry.com.
Study Design
Go to sections
Study Type : Observational [Patient Registry]
Estimated Enrollment : 10000 participants
Observational Model: Cohort
Time Perspective: Prospective
Target Follow-Up Duration: 2 Years
Official Title: Comparison of ME/CFS and Long COVID-19 Patients
Actual Study Start Date : May 1, 2020
Estimated Primary Completion Date : May 1, 2025
Estimated Study Completion Date : May 1, 2025
Groups and Cohorts
Go to sections
Group/Cohort
People with ME/CFS
No intervention will be administered.
People with Long-COVID
No intervention will be administered.
Healthy Controls
No intervention will be administered.


Outcome Measures
Go to sections

Primary Outcome Measures :
Phenotypic data collection [ Time Frame: 24 months ]
We want to collect a large, well-characterized longitudinal dataset to understand causes and identify treatments for ME/CFS and long-COVID.

Subtyping [ Time Frame: 24 months ]
We aim to use the phenotypic and associated biological samples from the Registry to identify disease subtypes.


Secondary Outcome Measures :
Demographics [ Time Frame: 24 months ]
We record basic demographic information of our Registry population including: age, race, ethnicity, income, education, employment, marital status. Demographic information is recorded at baseline and updated every 12 months.

Comorbitities [ Time Frame: 24 months ]
We want to catalogue common comorbidities in our registry population. Participants provide information on diagnosed conditions, age of onset, and whether the condition is still active. Their conditions list can be updated over time.

Treatments [ Time Frame: 24 months ]
We want to catalogue commonly used treatments in our registry population. Participants provide information on past and current treatments and provide ratings of their effectiveness at relieving symptoms. Their treatments list can be updated over time and information on ongoing use can be recorded via a mobile app.

Quality of Life and Functional Status [ Time Frame: 24 months ]
Participants fill out the Short Form 36 Quality of Life survey and a version of the Karnofsky Performance Scale modified for self-report over time.

Symptoms [ Time Frame: 24 months ]
We want to catalogue the common symptoms of ME/CFS and long COVID and analyze the data for symptom-based phenotypes. We administer a survey to assess the frequency and severity of symptoms over time and provide access to a mobile app so participants can log data on their symptoms as often as daily.


Biospecimen Retention: Samples With DNA
dried blood spot, whole blood, blood components, saliva, urine, fecal, plasma

END

edited for clarity and to untag Dotty.

 hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME

In answer to Dotty’s request to provide evidence of the researchers conflict of interest, I have pasted below a Hansard transcript of a parliamentary debate. The full link is above and I have since edited it down to concentrate on the main points . As you can see there is much concern , particularly as the PACE trial was partially funded by the DWP dept of work and pensions ( never ever happened before or since ) and the researchers work for insurance companies whose views could possibly affect any claims.



PACE Trial: People with ME
Volume 636: debated on Tuesday 20 February 2018


I congratulate the hon. Lady on securing this debate. Does she agree that there is still huge concern among ME patients that the National Institute for Health and Care Excellence says it will not abandon the promotion of physio-social therapies for ME, despite the widespread scientific criticism of the PACE trial methodology, and that we must ensure that that is addressed as a matter of urgency?

Although ME is a pathological, not psychological, condition, much about it remains a mystery. The reasons for that are twofold. First, many sufferers are housebound and therefore easy for society to ignore. Secondly, there is a lack of awareness among medical professionals and as a result a woeful lack of quality research. What we do know is that ME is often triggered by a viral infection such as flu, but, unlike healthy individuals, people living with ME do not recover. Into that research drought entered the PACE trial—pacing, graded activity and cognitive behaviour therapy; a randomised evaluation.

The trial was unique in medical research. It was funded by the Department for Work and Pensions to the tune of £5 million, a point to which I will return. From the very start the PACE trial was flawed. In contravention of the World Health Organisation classification, it assumed that ME was psychological and sufferers could recover if they chose so to do. Thus the PACE trial was framed in psychological terms.

The participants in the PACE trial received a range of different treatments, including cognitive behaviour therapy and graded exercise therapy, where patients were encouraged to become physically active and then increase the activity’s intensity. Unbelievably for a trial this large, none of the groups was given specific medical interventions. The results were published in The Lancet in 2011, with the contentious claim that CBT and GET brought 30% of patients back to normal, while 60% improved. The media reported that all ME sufferers had to do to recover was exercise. However, the report was immediately questioned by the patient community. How could exercise, the very thing that was known to worsen symptoms, actually help?

 One participant in the original trial has contacted me:

“I was determined to be a part of the...trial because I wanted to get better—so if this ‘treatment’ could make me better I wanted to give it the chance to do so. I was assigned Graded Exercise Therapy. It never occurred to me that it would actually make me more ill. Nor did it occur to me that decline would not be documented, and that despite patients not recovering (or in some cases worsening), they would publish that .

Calls to publish the raw data—basic protocol in good research—were ignored. Queen Mary University spent an estimated £200,000 on keeping the data hidden. Finally, after a long battle, patients won a court order to force the PACE authors to release the data. It was discovered that the authors had altered the way in which they measured improvement and recovery, to increase the apparent benefit of the therapies. Re-analysis showed that the improvement rate fell from 60% to 21% and the recovery rate fell from 22% to just 7%.

The method of patient reporting has also been questioned. As one participant says:

 First, I will mention the self-reporting that was a part of the trial. Questionnaires provided the data and measures of success. There were no physiological or scientific measurements. For patients the damage was done. I am a science teacher by profession and I always told my pupils that there are a number of stages to any scientific investigation: “Start with a hypothesis. Decide how you will test this theory, what measurements you will make, how you will record your results and how you will use these results to draw your conclusions. Those conclusions, which might be different from the original hypothesis, must be based on the evidence you have gathered.”

That did not happen in the PACE trial, which relied on patient self-reporting, rather than measurable physiological parameters. Furthermore, when the results were not as expected, rather than revise the original hypothesis, the investigators simply changed the success criteria. Thus patients participating in GET who had deteriorated during the study were considered recovered.

Of course, the failure of the PACE trial to do that could simply be put down to bad science, but unfortunately I believe that there is far more to it. One wonders why the DWP would fund such a trial, unless it was seen as a way of removing people from long-term benefits and reducing the welfare bill.

This is a worldwide issue. The PACE trial results have affected people all over the world. In my folder, I have examples of people from Australia, the United States and Canada. Although there are no specialist centres in Scotland, the ones in England are recommending graded exercise therapy, which is making people worse. We need to deal with the issue.

I will make some progress. The PACE trial was used to inform NICE guidelines, which has meant that symptoms have been disregarded, and sufferers are considered to be attention-seeking hypochondriacs or even, in the case of some female patients, hysterical. Although in some ways the lack of belief has been the most difficult thing for sufferers and their families, the impact of the PACE trial and the resulting NICE guidelines is far further reaching. Many sufferers have reported major difficulties in accessing financial support. Employment and support allowance assessments do not consider the impact of exertion on a person’s ability to function on subsequent days, and personal independence payment assessments, which consider ME to be psychological following the PACE report, mean that sufferers struggle to access that entitlement and simply rely on family members.

Conflicts of interest in the trial are also deeply worrying. The former chief medical adviser to the DWP sat on the trial’s steering committee, and ultimately the results of the trial have been used to penalise those with ME. When we consider the relationship between key PACE investigators and major health insurance companies such as Unum, the trial takes on a far more sinister slant. Sufferers have reported that their health insurance company would pay out only if they undertook a programme of GET—an impossible task, as the insurance giants knew.

It is not only adults who are affected. Children with the disease have been subject to care proceedings because of widespread misunderstanding among health workers. ME has been mistaken for school phobia, neglect or even abuse.

Many parents who try to home school their children also face local authority intervention, trying to get the children back to school. We must listen to patients.

Ultimately, the impact of the PACE trial on those with ME has been devastating.


Does my hon. Friend agree with my long-term family friend Maureen Bivard that the cover-up, and the way in which the PACE trial was carried out, amounts to a miscarriage of justice for patients?

I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.

END


Edited for clarity and to untag Dotty.

I apologise to librarylady , and Dottyscrapper

I am sorry for derailing the post , I just don't want other  people to be hurt as my family has been with questionable research from the same researchers now influencing Long Covid.

I think that there are connections which are important for people to be aware of. People can not give informed consent to particular treatments if they have not given the full facts of risks / benefits.

Accurate research is vital to pass on facts to patients so any decision they make regarding their health care is correct for their needs.

I hope it will be valuable information for Long Covid patients to know that  particular researchers involved in Long Covid have been involved in very questionable research before with M.E /CFS and have have had their treatment recommendations subsequently withdrawn by the CDC and health policy makers called NICE ( National Institute of Healthcare and Excellence )in the uk.

Dotty, you asked for evidence , you asked for clarification , I responded. However I probably have bombarded you with too many links so apologise for that as well.


It is an extremely complicated area and I know Dotty that you like proof judging from a lot of your other posts on different topics . I have tried to include information that can put things into context and help with the understanding in an area filled with twists and turns.

My original posts were a bit of a muddle , and I can see now Dotty why you asked for clarification, hopefully they are clearer now I have now tidied them up and provided more links.


It’s taken years for our family to follow the research and the politics and to try and relay that information is almost impossible in short bursts. It has also been something that I have found upsetting because it is a raw and painful subject for us.

This shouldn’t be made into a defence of poor science but rather shedding sunlight and transparency into medical harm with a view for patient protection. One of the principal cores of medical treatment is first do no harm, and that is what this is all about.


Since posting a lot of the information originally when tired and stressed , I have since taken another look and tried  to condense the information to make it more pertinent and hopefully more clearer and easier to understand. As such some of the original posts now have reduced content.

EDITED to add extra apology and fuller explanation.

PS
if someone could let Dotty know on my behalf about my later apology , it would be very much appreciated.

It's definitely worth further study. The few folks I know who experience ongoing symptoms after COVID-19 infection have some neurological symptoms, including tinnitus and neuropathy. Almost every person I know who has had symptomatic COVID indicated they also felt depressed, "in a dark place" or even having suicidal thoughts. These are people who had otherwise not experienced or expressed any significant mental health issues (even in "lockdown").

So, this is all very anecdotal, but the neurological and neuropsychiatric of COVID is something that demands further study.