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Beiträge, die mit chronicfatiguesyndrome getaggt sind

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"Almost no ME/CFS patients return to work: "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher."

https://www.sciencenorway.no/chronic-fatigue-syndrome-diseases-me/almost-no-me/cfs-patients-return-to-work/2482762

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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Almost no ME/CFS patients return to work "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher. The Norwegian Labour and Welfare Administration requires ME/CFS patients to go through work-oriented measures in order to be granted disability benefits, which is a challenge for many patients. (Photo: Gorm Kallestad / NTB) Emilie Wee Journalist Published 21 March 2025 - 00:01

Study reveals that ME/CFS patients struggle to return to work

'The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect,' says a researcher.
Emilie Wee (ScienceNorway)
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

Recording with:

- Dr David Joffe: an overview of biological basis of Long COVID

- Dr David Tuller: on basis of psycho-behavioural therapy focusing on the PACE trial & a major #LongCOVID trial"

https://youtu.be/V9f_kjlz6Ho

From latest Science for ME update

@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#SARSCoV2 #CovidIsNotOver
@auscovid19 #auscovid19
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Kirby Institute Dr David Joffe & Dr David Tuller - Is Long Covid psycho-behavioural or biological? State of evidence Recording of a recent and great talk at Kirby Institute, Australia. "In this talk, Dr David Joffe will provide an overview of the biological basis of Long COVID, while Dr David Tuller will examine the basis of psycho-behavioural therapy focusing on the PACE trial and a major Long COVID trial."
#cfs #LongCovid #mecfs #pwme #PostCovid #PASC #CovidIsNotOver #sarscov2 #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #postcovidsyndrome #covidbrain #Coronavirus #auscovid19 #neuropasc @MECFS group @AusCOVID19 group @longcovid group @covid19 group

It's the 7th anniversary of this paper.

A lot of it was only possible due to Alem's heroic FOI victory, which the #PACETrial team fought so hard to stop.That surely wasn't because the real results weren't as flattering as they had presented them?

https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Screenshot of abstract

Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT - BMC Psychology

Background The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome.
BioMed Central
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pacetrial @MECFS group

Today is 8-year anniversary of this rejoinder, where we defend our recovery reanalysis paper which found no difference in rates of recovery from #CFS with graded exercise therapy or CBT vs specialist medical care-alone group in £5m #PACEtrial

Free: https://researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Screenshot of abstract and title
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pacetrial @MECFS group

Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

https://www.jmir.org/2025/1/e59217/

From the latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS @pots
Journal of Medical Internet Research Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative — Hannah L Mandel "The initial focus among clinicians on respiratory symptoms and widespread lack of knowledge around what were initially considered to be “atypical” presentations, such as postexertional malaise, ME/CFS, POTS, and dysautonomia, also contribute to missingness of relevant diagnoses within the EHR"

Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

The benefits and challenges of electronic health records (EHRs) as data sources for clinical and epidemiologic research have been well described.
Journal of Medical Internet Research
#cfs #pots #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome #covidbrain #neuropasc @MECFS group @longcovid group @pots group

UK APPG: Minutes of the UK All Party Parliamentary Group for ME/CFS meeting on 5th March

https://appgme.co.uk/wp-content/uploads/2025/03/2025-03-05-APPG-on-ME-Minutes.pdf

From the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
UK APPG Minutes of the UK All Party Parliamentary Group for ME/CFS meeting on 5th March A representative from the Department of Health and Social Care gave an update, including reasons for delays as the new government develops its overall policy on health and care. The APPG discussed its plans and priorities.
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

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Unusual but sympathetic paper:

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

https://www.mdpi.com/1660-4601/22/2/275

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

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Abstract People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language are more likely to arise when healthcare professionals are confronting complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies. These problematic conversations between practitioners and patients often involve specific words and phrases—termed the “never-words”—can leave patients in significant emotional distress and negatively impact the clinician–patient relationship and recovery. Seeking to prevent these destructive interactions, we review key literature on best practices for difficult clinical conversations and discuss the application of these practices for people with Long COVID, ME/CFS, dysautonomia, and other complex chronic disorders. We provide recommendations for alternative, preferred phrasing to the never-words, which can enhance therapeutic relationship and chronic illness patient care via compassionate, encouraging, and non-judgmental language.

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighte…
MDPI
#cfs #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome #covidbrain #neuropasc @MECFS group @longcovid group

trying this out today:

Daily Drop about Long Covid ME/CFS updates: https://turnto.ai/download

#Covid
#LongCovid
#MECFS
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#COVID #LongCovid #mecfs #MyalgicEncephalomyelitis #chronicfatiguesyndrome

Possible Racial Disparities in the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

https://www.mdpi.com/1660-4601/22/2/280

"White respondents had 2.94 greater odds of being diagnosed with ME/CFS than non-White respondents"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Abstract Myalgic encephalomyelitis (ME/CFS) a chronic, disabling illness with no established etiopathology. It has been indicated in some population-based studies that Black and ethnic minority populations are underdiagnosed with ME/CFS. The aims of the present study were to (1) identify the agreement between receiving an ME/CFS diagnosis and meeting diagnostic criteria, (2) identify the demographic characteristics associated with receiving a diagnosis, and (3) explore patient satisfaction with healthcare. Self-reported medical history and symptoms were collected via online survey from respondents with and without fatigue. The agreement between self-reporting an ME/CFS diagnosis and meeting the Center for Disease Control’s (CDC) ME/CFS criteria or Institute of Medicine (IOM) criteria was assessed with Cohen’s kappa. Patient characteristics predicting a physician diagnosis were analyzed with logistic regression. Associations between diagnosis, demographics, and healthcare satisfaction were assessed with chi-square tests of independence. There were 1110 responses. The agreement between meeting ME/CFS criteria and reporting an ME/CFS diagnosis was fair (CDC: κ = 0.29; SE = 0.02; IOM: κ = 0.28, SE = 0.03). White respondents had 2.94 greater odds of being diagnosed with ME/CFS than non-White respondents. Having an ME/CFS diagnosis was associated with dissatisfaction with healthcare (χ2 (3, N = 1063) = 14.17, p = 0.003).
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

"Most participants grieved for lost hobbies, abilities and opportunities and most participants spoke about inconsistent, fluctuating educational support for their ME/CFS needs"

https://research.manchester.ac.uk/en/studentTheses/what-is-the-psychological-and-educational-impact-of-being-an-emer

Screenshot from latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Thesis: The University of Manchester What is the psychological and educational impact of being an emerging adult living with ME/CFS? A qualitative interpretative phenomenological analysis — Emma Williams "Feeling misunderstood was at the heart of many psychological and educational experiences." "All participants reported ME/CFS has restricted their lives, bodies or future. A detrimental tendency to push beyond energy capacity was exacerbated by pressure, frustration and/or denial. Most participants grieved for lost hobbies, abilities and opportunities and most participants spoke about inconsistent, fluctuating educational support for their ME/CFS needs."
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

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Good Practice Guidelines for Psychologists Working with People with ME/CFS November 2024 Update

https://meassociation.org.uk/wp-content/uploads/2024/11/BPS-MECFS-Guidelines-Update-11.11.24.pdf

Although this isn't brand new, I found it interesting so I'm going to post some extracts to this thread.

#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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Logos for the British Psychological Society, Action for ME & ME Association Good Practice Guidelines for Psychologists Working with People with ME/CFS November 2024 Update Screenshot of 1st 2 paragraphs
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome

Particularly relevant when similarities with the #LongCovid presentation in some people are being missed

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
APPENDIX 2. ME/CFS Symptom Prevalence and Severity (These prevalence and severity figures are from A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome, P. De Becker, N. McGregor, and K. De Meirleir. Journal of Internal Medicine 2001;250:234-240.) A total of 2,073 consecutive patients with major complaints of prolonged fatigue were assessed. Among them 1,578 met the Fukuda criteria and of those, 951 met the Holmes criteria. The figures indicate the differences in prevalence and severity of symptoms between these patient groups.
#cfs #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome #covidbrain #neuropasc @MECFS group @longcovid group

"We found family histories of ME/CFS were significantly higher (18%) among the ME/CFS group than the non-ME/CFS controls (3.9%)."

Free:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11537498/

Image is from free AMMES February 2025 e-newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Image of a man and woman both holding the hands of a young child with the text: The influence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) family history on patients with ME/CFS Confirming findings from prior studies, those with ME/CFS were more likely to have family members with ME/CFS than controls. We found family histories of ME/CFS were significantly higher (18%) among the ME/CFS group than the non-ME/CFS controls (3.9%). In addition, patients with ME/CFS who had family histories of ME/CFS were more likely to have gastrointestinal symptoms than those with ME/CFS without those family histories. Read more here>>
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

From Peter Rowe team

Provocation of brachial plexus and systemic symptoms during the elevated arm stress test in individuals with myalgic encephalomyelitis/chronic fatigue syndrome or idiopathic chronic fatigue

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-025-06137-7

Image from latest Science for ME update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Journal of Translational Medicine Provocation of brachial plexus and systemic symptoms during the elevated arm stress test in individuals with myalgic encephalomyelitis/chronic fatigue syndrome or idiopathic chronic fatigue — Edwards et al. "the EAST was abnormal in 98% of those reporting symptoms with arms-overhead or arms-extended postures. This prevalence compares to 43% who had an abnormal ULNT1, another commonly used screening maneuver for thoracic outlet syndrome."

Provocation of brachial plexus and systemic symptoms during the elevated arm stress test in individuals with myalgic encephalomyelitis/chronic fatigue syndrome or idiopathic chronic fatigue - Journal of Translational Medicine

Background We have noted that some adolescents and young adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) report difficulty with arms-overhead activities, suggestive of brachial plexus dysfunction or thoracic outlet syndrome (T…
BioMed Central
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

Tetrahydrobiopterin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Friend or Foe?

[OI = orthostatic intolerance]

https://www.mdpi.com/2218-273X/15/1/102

Image is from the Science for ME latest update

#MEcfs #CFS #PwME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Biomolecules Tetrahydrobiopterin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Friend or Foe? — Rahman et al. "Based on our recent findings, we observed that tetrahydrobiopterin (BH4) metabolism was highly dysregulated in ME+OI patients. In the current review article, we attempted to summarize our recent findings on BH4 metabolism to shed light on the molecular mechanisms of OI."

Tetrahydrobiopterin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Friend or Foe?

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) is a chronic multisystem disease characterized by severe muscle fatigue, pain, dizziness, and brain fog.
MDPI
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

Relationship between major depressive disorder & myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysis

https://www.nature.com/articles/s41598-025-85217-6

"The results of the MR analysis revealed no causal relationship between MDD & ME/CFS"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Abstract Major depressive disorder (MDD) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) frequently occur together; yet their causal relationship remains unclear. To investigate the potential genetic causal link between these conditions, we conducted a two-sample Mendelian randomization (MR) analysis. Summary data from Genome-Wide Association Studies (GWAS) for MDD were sourced from the UK Biobank and the Psychiatric Genomics Consortium, while GWAS data for ME/CFS were retrieved from the UK Biobank. Inverse-variance weighting (IVW), the MR-Egger method, and weighted median, simple and weighted modes were used to perform the MR analysis. In addition, Cochrane’s Q-test was used to detect heterogeneity among the MR results. Horizontal pleiotropy was detected using the MR-Egger intercept and the MR pleiotropy residual sum and outlier (MR-PRESSO) tests. Leave-one-out analysis was performed to investigate the sensitivity of the association between MDD and ME/CFS. The results of the MR analysis revealed no causal relationship between MDD and ME/CFS. The pleiotropy test revealed that causality bias was improbable, and no evidence of heterogeneity was found among the genetic variants. Finally, the leave-one-out test confirmed the stability and robustness of our findings.

Relationship between major depressive disorder and myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysis - Scientific Reports

Scientific Reports - Relationship between major depressive disorder and myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysis
Nature
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

Dr David Tuller Talk on "Bad Science, Bad Medicine: How Flawed Biopsychosocial Studies on ME, Long Covid and Related Illnesses Harm Patients" (2024)

YouTube link:
https://www.youtube.com/watch?v=nskeLpbVMHg

It would be great if more people could subscribe to our channel

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid
"Bad Science, Bad Medicine: How Flawed Biopsychosocial Studies on ME, Long Covid and Related Illnesses Harm Patients". David Tuller, DrPH Senior Fellow in Public Health and Journalism Center for Global Public Health School of Public Health University of California, Berkeley davetuller@berkeley.edu Ireland: October 20-28, 2024 Free recording now available on YouTube logo Irish ME/CFS Association logo

- YouTube

Auf YouTube findest du die angesagtesten Videos und Tracks. Außerdem kannst du eigene Inhalte hochladen und mit Freunden oder gleich der ganzen Welt teilen.
www.youtube.com
#cfs #LongCovid #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group @longcovid group

New from Canada/Ireland/UK/US:

“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with
#LongCOVID...an international community-engaged qualitative research study

https://www.medrxiv.org/content/10.1101/2024.12.11.24318864v1

Also relevant to #MECFS

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Screenshot of abstract

“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with Long COVID – Results from an international community-engaged qualitative research study

Introduction Long COVID is a multisystem condition that negatively impacts daily function. Pacing is a self-management strategy to mitigate symptoms.
medRxiv
#cfs #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome @MECFS group @longcovid group

Press release:
Immune T cells become exhausted in chronic fatigue syndrome patients

https://www.eurekalert.org/news-releases/1066876

Longer piece from same university with more quotes:
https://news.cornell.edu/stories/2024/12/immune-t-cells-become-exhausted-chronic-fatigue-syndrome-patients

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
News Release 3-Dec-2024 Immune T cells become exhausted in chronic fatigue syndrome patients Peer-Reviewed Publication Cornell University ITHACA, N.Y. – Chronic fatigue syndrome creates conditions where pathogen-killing immune T cells become exhausted, according to a new Cornell University study. The study’s authors knew the immune system was dysregulated in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) but wondered which parts shift with the condition. A systematic exploration revealed that key CD8+ T cells displayed one of the most pronounced signatures of dysregulation, with signs of constant stimulation that lead to an exhausted state, a condition that is well-studied in cancer. “This is an important finding for ME/CFS because now we can examine the T cells more carefully, and hopefully by looking in the exhausted cells we can start to get hints as to what they are responding to,” said Andrew Grimson, professor of molecular biology and co-corresponding author of the study. Maureen Hanson, professor of molecular biology and genetics, is the other corresponding author.

Immune T cells become exhausted in chronic fatigue syndrome patients | Cornell Chronicle

The study found that key CD8+ T cells showed signs of constant stimulation that lead to an exhausted state, a condition that is well-studied in cancer.
Cornell Chronicle
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

UK focused article on the biopsychosocial model of disability.

A lot of it focuses on ME/CFS, controversies but also tragedies such as people dying from the illness
https://www.scottishlegal.com/articles/david-j-black-economic-fallacies-and-public-health-realities

Includes mentions of Simon Wessely & #PACEgate

#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @disability
@disabilityjustice
David J Black: Economic fallacies and public health realities 27 Nov 2024 Clock icon Reading time: 8 minutes photo of David J Black In part two of his series on dysfunction in our health system, David J Black reminds us that the cost of bad medicine is people’s lives. Read part one here. It is one of those facts which cries out to be universally acknowledged: when it came to understanding the nature of such illnesses as ME/CFS, Lord Freud, despite being Sigmund’s great grandson, was almost wantonly ignorant, yet he was the ‘expert’ to whom the government had turned for advice. He had once wittered: “Our approach is – and this is rather a mouthful – akin to the biopsychosocial model.” This speculative doctrine would later resurface in Sir Mansel Aylward and Gordon Waddell’s 2009 manual Models of Sickness and Disability. Aylward, medical director and head scientific adviser to the DWP, and a promoter of the Woodstock conference, would become director of the UnumProvident Centre for Psychosocial Research at Cardiff University. The phrase “conflict of interest” should not be overlooked. The stark conclusion of Aylward/Waddell manual was that

David J Black: Economic fallacies and public health realities

In part two of his series on dysfunction in our health system, David J Black reminds us that the cost of bad medicine is people's lives. Read part one here.
Scottish Legal News
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pacegate @MECFS group @DisabilityJustice group @Disability group

Sweden:
"Despite broad criticism, the National Board of Health and Welfare will not update its knowledge support on post-infectious conditions."

Google English translation:
https://fof-se.translate.goog/artikel/socialstyrelsen-underkanner-whos-kunskapsunderlag-om-postcovid/?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Screenshot from Science for ME update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS
Sweden The research magazine Forskning & Framsteg writes about The National Board of Social Affairs and Health's guideline for post Covid and related conditions including ME/CFS. It has received a lot of criticism, among other for not including WHO's red flags regarding rehabilitation and safety for patients. Dr. Judith Bruchfeld says this is worrying and that she also misses information on POTS and breathing problems.

Socialstyrelsen underkänner WHO:s kunskapsunderlag om postcovid

Socialstyrelsens kunskapsstöd om postinfektiösa tillstånd presenterades i augusti i år och fick då skarp kritik från läkare, forskare och patientföreningar – vilka ansåg att det …
jonas.mattsson@fof.se (Forskning & Framsteg)
#cfs #pots #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome @MECFS group @longcovid group

The Institute for Neuro-Immune Medicine has posted a video (42 minutes): "Neurovascular Dysregulation During Exercise in ME/CFS and Long COVID."

In it Dr David Systrom talks about new research on neurovascular issues in #MECFS & #LongCOVID
https://www.youtube.com/watch?v=TD-eSXKvfq

#PEM @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid

- YouTube

Auf YouTube findest du die angesagtesten Videos und Tracks. Außerdem kannst du eigene Inhalte hochladen und mit Freunden oder gleich der ganzen Welt teilen.
www.youtube.com
#cfs #LongCovid #mecfs #pwme #PostCovid #PASC #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #lc #postcovidsyndrome #PEM @MECFS group @longcovid group

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Thanks very much to David for his kind words on me in this. I have largely retired from writing papers, letters & e-letters and am very grateful to him for his ongoing work which takes a lot of ongoing commitment, plus dealing with many frustrating scenarios.

https://virology.ws/2024/11/13/trial-by-error-my-tour-of-ireland-through-wind-and-rain-slides-of-my-talk/

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC

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Virology blog logo Trial By Error: My Tour of Ireland, Through Wind and Rain; Slides of My Talk 2 Comments / By David Tuller / 13 November 2024 By David Tuller, DrPH

Trial By Error: My Tour of Ireland, Through Wind and Rain; Slides of My Talk | Virology Blog

By David Tuller, DrPH Last month, I took a quick speaking tour around Ireland at the invitation of the Irish ME/CFS Association. I first became acquainted w ...
David Tuller (Virology Blog)
#cfs #LongCovid #mecfs #pwme #PASC #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc @MECFS group @longcovid group

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