På ME-fronten: Alice, Mad Hatters and down the Rabbithole

Eventyrserien «Once Upon a Time» har kanskje en annerledes fremstilling av de kjente og kjære eventyrene vi alle kjenner så godt til, og moralen/etikken i fortellingen er... ??. Dette innlegget har fått tittel «Alice, Mad-Hatters and down the Rabbit-hole». Ja, på ME-fronten. Som rammet av denne nevrologiske sykdommen med kjernesymptom en unormalt raskt innsettende trettbarhet (Fatigability) av fysiske og mentale funksjoner ved aktivitet. Med redusert restitusjonsevne og beskjeden belastning over tålegrensen til alle de fysiologiske systemene vil aktivisere sykdommen med økt klinisk symptombilde (antall, intensitet og hyppighet) og utvikling av PEM (Post Exertional Malaise).

28juli2019_ME and the perils of internet activism_The Guardian_journalist Andrew Anthony

and «down the Rabbit-hole», jeg går: Som pasient har jeg med flere blitt ganske så hardhudet, men å bli skremt til en kronisk tilbaktrukket skilpadde er heller ikke ett alternativ. Dessuten er det faktisk moralske/etiske grenser for hvor hardhudet , iallefall jeg, både klarer og vil være.

Michael Sharpe (Oxford Professor of Psychological Medicine) har dette året meningsytret ved en rekke anledninger; «announced that he had withdrawn from research on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), because the field had become “too toxic”» og «Sharpe no longer conducts research into CFS/ME treatments, focusing instead on helping severely ill cancer patients. “It’s just too toxic,” he explained.» og «Tragically, he no longer studies CFS/ME, instead of working with another group adversely impacted by fatigue—critically ill cancer patients. «.

…og David Tuller, journalist og koordinator for masterprogrammet i helsepolitikk og journalistikk ved University of California, Berkeley, sine 15 000 ord (på norsk av J. JelstadTRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study» får skylden for ALT som skjer i  Oxford Professoren livssituasjon.

…men har virkelig Michael Sharpe sluttet å «forske» på ME?

…og har virkelig journalist David Tuller skylden for alt?

…er virkelig ME-feltet «Toksisk» for forskere?

Hendelser, hendelsesforløp, utsagn og mine kommentarer

28juli2019: Andrew Anthony, som har skrevet for både The Guardian siden 1990 og The Observer siden 1993, må totalt ha mistet både sin journalistiske integritet og evne til kildekritikk/ faktasjekk i denne «ME and the perils of internet activism» trykksaken i The Guardian.

Utsagn/diskusjon 1: «Sharpe first became interested in the relationship between ME/CFS and psychological therapies in the late 1980s when he ran a psychiatry and psychology service at the John Radcliffe hospital in Oxford. An infectious disease doctor kept telling him that his clinic was full of chronically fatigued patients whom he was unable to help. Symptoms vary in the condition but in many cases sufferers report total exhaustion and an inability to move, let alone exercise. Sharpe says he decided to try some CBT treatments, which proved “remarkably helpful”.»

«In 1996, he published his first trial in the British Medical Journal and his head of department received a letter saying the research was flawed. “Luckily, in those days the head of department just looked at the data, said it all seemed fine and told me to carry on.”»

Forarbeidene til CBT-studien Sharpe 1996 «Cognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial» er også nevnt i trykksaken 22juli2019 «The Dark Side of Social Media Activism in Science«, Psychology Today av Vanderbilts Stephen Camarata PhD

I Surawy et al. 1995 beskrives en kognitiv modell/sykdomsforklaring for ME basert på litt over hundre observasjoner: «In this paper we have reported observations about patients who presented to a medical clinic with chronic disabling fatigue and have linked these in a theoretical model of aetioiogy. Both observations and theory must be regarded as preliminary. The observations we have made are subject to important limitations.».»…the observations have been made during treatment and require confirmation by objective measurement techniques.».
«We have suggested that certain clinical characteristics are common in patients with CFS and that cognitive factors are essential in developing an adequate understanding of the aetiology of this illness. We have also described the cognitions (thoughts and underlying assumptions) we have encountered in patients with CFS and suggested a theory of the aetiology in which these cognitions play a key role»
«We have proposed that once the illness is established, cognitive, behavioural, emotional, physiological and social factors may perpetuate it.»
«The model we have proposed suggests that it is not a particular biological process, but rather specific psychological and behavioural mechanisms that are the common factors determining the clinical characteristics of the syndrome.»
«Tests of the cognitive model will have to determine the following: The specificity of the characteristic cognitions and assumptions: comparisons with normal persons and with patients from other diagnostic groups (e.g. depression and hypochondriasis) are required. The role of characteristic cognitions in the aetiology and perpetuation of CFS: this requires further experimental investigation including treatment trials in which the patients’ cognitions are elicited and challenged. Such trials are in progress (Sharpe, 1993). The role of life stresses in precipitating CFS and chronic social difficulties in perpetuating the illness.».

Denne sykdomsforklaringen og sykdomsmekanismene på klinisk entitet innehar alle «sykdomsfremmede faktorer (disponerende, vedlikeholdene, vedvarende)» som i barnelege Vegard Bruun Bratholm Wyller sin hypotese i fra 1996. Wyller har i tillegg i sin hypotese forklart med HPA-akse og i siste studie ilagt økt vekt på emosjoner.

Sharpe har i løpet av siste år oppdatert kapitelet om CFS og Fibromyalgi i tredje utgave av psykosomatisk medisin. Om modeller står dette:

M Sharpe_Modeller for CFS og FM_textbook for psycosomatic med. 3 ed_6aug2018. Se ref/notatliste for 1st ed.

I oversiktsartikkelen, 2mai2019, til lege Mark Vink og Alexandra Vink-Niese, hvor de analyserer Cochrane sin CBT for ME/CFS metaanalyse, står blant annet dette om RCT studien til Sharpe 1996:

«Denne studien hadde ingen kontrollgruppe (oppsøke lege om nødvendig) og 35% av deltakerene hadde ingen funksjonsnedsettelse av daglig aktivitet ved inngangen til studien (en Karnofsky skår (KPS) på 80 og mer). Inklusjonskriteriene var å tilfredstille Oxfordkriteriene (Sharpe et al 1991) og en KPS <80, som mål på nedsatt funksjonevne av daglige gjøremål, hvor av 60/123 deltakere ble inkludert. Gruppene hadde stor variasjon mellom seg, da det var hele dobbelt så mange menn (40%, 12/30) i CBT-gruppa enn kontrollgruppa (23%, 7/30). Studien inkluderte en 6min gåtest (6MWT). Vink konkluderer med bruk av Oxford-kriterier og at så mange som 35% av de 60 deltakerene hadde normal funksjon, dårlig matchet grupper og ingen kontrollgruppe (kun lege), ikke kan konkludere at CBT er effektiv behandling for ME/CFS. Kommentarer på denne studien finnes også på BMJ, blant annet av Tom Kindlon.

Sharpe kalte studien “remarkably helpful og egen forskningsinstitusjon beskrives likegyldig og lite kvalitetsbevisste ovenfor Sharpe (noe som ser ut til å tilfrestille mannen). Når en står oppført som (første)forfatter og har korrespondanse ansvar, kan en ikke klage over ubehaglige spørsmål og kritiske bemerkninger i en vitenskapelig publikasjon heller. Akademisk regel!

«In 1996, he published his first trial in the British Medical Journal and his head of department received a letter saying the research was flawed. “Luckily, in those days the head of department just looked at the data, said it all seemed fine and told me to carry on.

Notater/referanser, utsagn 1:

Surawy, C., Hackmann, A., Hawton, K., & Sharpe, M. (1995). Chronic Fatigue Syndrome: A cognitive approach. Behaviour Research and Therapy, 33(5), 535–544. doi:10.1016/0005-7967(94)00077-w

[pubmed/PMC] [GoogleScholar] [pdf]

Sharpe, M. C. (1993). Non-pharmacological approaches to treatment. In Bock, G. Kamp, Whelan, J. (Eds). Chronic Fatigue Syndrome (CIBA foundation symposium 173) (pp. 298-308). Chichester: Wiley.

[pubmed/PMC] [div kilder]

Sharpe M, Hawton K, Simkin S, et al. Cognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial. BMJ. 1996;312(7022):22–26. doi:10.1136/bmj.312.7022.22

[pubmed/PMC] [Crossref] [div kilder]

Vink, Mark, and Alexandra Vink-Niese. “Cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review.” Health psychology open vol. 6,1 2055102919840614. 2 May. 2019, doi:10.1177/2055102919840614

[pubmed/PMC] [Crossref]

Michael Sharpe, O’Malley P. 6aug2018. Chronic Fatigue & Fibromyalgia Syndromes. The American Psychiatric Association Publishing Textbook of Psychosomatic Medicine and Consultation-Liaison Psychiatry, Third Edition. (Kap.,p.308-) [1st ed.(2005) kap.26,p.555-575] [div kilder]

Stephen Camarata PhD. The Dark Side of Social Media Activism in Science. Psychology Today, 22juli2019 [Crossref]
Andrew Anthony, journalist. ME and the perils of internet activism. The Guardian, 28juli2019 [Crossref]


Utsagn/diskusjon 2 ifra Andrew Anthony, journalist. ME and the perils of internet activism. The Guardian, 28juli2019, hvor Sharpe sier:

«It’s a development, says Sharpe, that has moved the conflict on to a “whole other level”. Such blogs and forums, he says, have become “a coordinating centre for actions against people getting the ‘wrong answers’”.

Tuller has called the Pace trial a “piece of crap” and says that his goal is to “completely discredit” it. He describes researchers who conduct psychological tests for treatment of ME/CFS as “insane”, and he was instrumental in persuading the respected science journal Cochrane Database of Systematic Reviews to withdraw a paper that looked at eight randomised controlled studies of exercise therapy for ME/CFS. Sharpe says that the Cochrane editor “wilted badly… under direct pressure” from activists. The editor has since retired, and Sharpe understands that his decision is to be reversed.»

Sharpe bokstavlig talt anklager David Tuller til å være  «instrumental/medvirkende i å overtale» Cochrane til å tilbaketrekke protokollen «Exercise therapy for chronic fatigue syndrome (individual patient data)», 7 desember 2018 i fra Cochrane Database of Systematic Reviews , samtidig anklager sjefsredaktør David Tovey at beslutningen skyldtes at han «visnet sterkt… under direkte press i fra aktivister«.

I Cochrane Community Blog. «Cochrane and conflict of interest.» 18 april 2016 og senere oppdatert 28juni2017, diskuterer sjefsredaktør David Tovey på bakgrunn av henvendelse i fra prof. James C Coyne. Her får vi også opplyst at manuskriptet basert på IPD – protokollen er under fagfellevurdering.

I saksdokumentene «Sak 17/10566 F08 Exercise Therapy for chronic fatigue syndrome – Cochrane review: Revidering av Larun et al.», fra blogginnlegg 3juni2019: «På ME-fronten: Cochrane vs Larun; Folkehelseinstituttet har bevisst villedet og tilbakeholdt informasjon«, fremkommer flere opplysninger.

I ett brev datert 4 oktober 2018 besvarer Editor in Chief Dr. David Tovey ved Cochrane Library professor Trygve Ottersen, fungerende direktør i Folkehelseinstituttet. blant annet dette:

«For the avoidance of doubt, as Cochrane’s Editor in Chief I am responsible for ensuring that the reviews published in the Cochrane Database of Systematic Reviews meet a defensible standard.»

«That said, the decisions made in this case have all been made in consultation and with the positive support of the Co-ordinating Editor for the Common Mental Disorders Group, Professor Rachel Churchill, and the Senior Editor of the Brain, Nerves and Mind Network, Professor Chris Eccleston.»

«On 18th February 2018, I was sent a formal complaint about the aggregate CFS review by the late Robert Courtney. (…), but following an initial assessment I asked a member of my editorial team to review its contents and to provide a report. As you can see, the report provided some support for Mr Courtney’s complaints and concluded that there was a case to answer.»

«At the time, we were also considering for publication a review of the same topic, also led by Lillebeth, but based on individual participant data. I decided that any action relating to the aggregate review should await an editorial decision on the IPD review.«

«Lillebeth, Rachel Churchill, Paul Glasziou and I had previously discussed the IPD review late last year when we met at a Conference. Rachel and I made it clear that the peer review feedback had revealed important issues that would need to be addressed prior to any publication

«Despite this, we were disappointed when the peer reviewers of the re-submitted review all agreed that the authors had not adequately addressed the methodological issues. We therefore decided that we had no option but to reject the IPD review

«I wrote to Lillebeth on the 31st July explaining that we had received a formal complaint about the aggregate CFS review, and that we believed that the complaint identified issues that merited a thorough re-evaluation of the review and appropriate response.»

«It is perhaps also important to note that these events coincide with the introduction of Cochrane’s eight new Networks and associated efforts to re-evaluate topic portfolios and coverage. Both the Cochrane Common Mental Disorders Group and the wider Brain, Nerves and Mind Network are undertaking a portfolio review and, as part of this, we are currently in the process of withdrawing several out of date reviews and protocols and moving the topic of CFS to a new Network. We hope the opportunity provided by this transition might provide Lillebeth and her co-authors with the time they need to adequately address the issues raised.»

«I think it is fair to point out that the sensitivities around this review have led to both sides of the argument becoming entrenched.»

«We have noted that Lillebeth, and the trialists of the included reviews, tend to refer to all criticism of the trials and the review as being the result of ‘activism’

«We agree completely that abusive and threatening behaviour is never appropriate, but also judge much of the criticism, as well as the peer review comments we have received on both reviews, to be thoughtful and reasonable.«

«We have no wish to add to the social media storm relating to this review, or the personal attacks on Lillebeth and her colleagues, but we have a responsibility to ensure the quality of published Cochrane Reviews.«

«Responding appropriately to criticism is a key part of the quality assurance process, and we are disappointed that previous criticisms have not been addressed sufficiently in our judgement.«

IPD-protokollen ble tilbaketrukket i fra Cochrane Library, 7 desember 2018, med følgende respons:

«Reason for withdrawal from publication: This protocol has been withdrawn and it is no longer being progressed to a Cochrane review.

This protocol was published in 2014 and a new protocol is required for any future individual participant data (IPD) meta‐analysis on this topic.

The editorial group responsible for this previously published document have withdrawn it from publication.«

Kommentar: Som det fremkommer av brevet til sjefsredaktøren David Tovey, klarte ikke manuskriptet/metaanalysen GET for ME basert på individual participant data fra de åtte primære studiene om treningsterapi som behandling for ME/CFS, fagfellevurdering pga metodiske svakheter. Både i brevet, 4 oktober 2018 og tilbakemeldingen på siden til Cochrane 7 desember 2018, fremkommer der entydig og klart at fagfeller og redaktører er enige om at IPD-metaanalysen ikke tilfredtillte kvalitetskravet til Cochrane Database of Systematic Reviews.

Tillegg: I både trykksaken i Reuters 17 oktober 2018 og 13 mars 2019, som er skrevet av journalist Kate Kelland, uttaler Lillebeth Larun seg om pasientaktivisme og egne redaktører i Cochrane.

I Reuters 13 mars 2019 sier Larun følgende:

«Lillebeth Larun, a scientist at the Norwegian Institute of Public Health who led the Cochrane Review, is one of several scientists who vociferously disagreed with Tovey’s decision to withdraw it.

For her, the move is a sign that the activists who have plagued her for years have now got to her editors.

In the decade or so that she’s been conducting research in this area, she told Reuters, she’s endured online attacks and abusive emails, and at various points had to take a break from working due to the pressure.

Returning to a CFS/ME project would make her feel physically sick with anxiety.

Attempts to limit, undermine or manipulate evidence based results, pressure or intimidate researchers into or away from any given conclusions, will ultimately have a negative effect,” she told Reuters.

It will only lead to those researchers choosing to work in other areas and reduce the resources dedicated to providing the help patients so desperately need.”»

For Larun sine uttalelser i Reuters 17 oktober 2018, se blogginnlegg om saken datert 3 juni 2019, samt sjefsredaktør i Cochrane David Tovey brev 4 okt 2018 (beskrevet over).

Notater/referanser for utsagn 2:

Andrew Anthony, journalist. ME and the perils of internet activism. The Guardian, 28juli2019 [Crossref]

Larun, Lillebeth, Jan Odgaard‐Jensen, Kjetil G Brurberg, Trudie Chalder, Marianne Dybwad, Rona E Moss‐Morris, Michael Sharpe, Karen Wallman, Alison Wearden, Peter D White, Paul P Glasziou. Exercise therapy for chronic fatigue syndrome (individual patient data). Cochrane Database of Systematic Reviews 2014, Issue 4. Art. No.: CD011040.DOI: 10.1002/14651858.CD011040.

[Crossref] [pdf] [div kilder]

David Tovey. Cochrane and conflict of interest. Cochrane Community Blog. 18 april 2016. Oppdatert 28juni2017 [Crossref]

Blogginnlegg 3juni2019: «På ME-fronten: Cochrane vs Larun; Folkehelseinstituttet har bevisst villedet og tilbakeholdt informasjon»

Editor in Chief Dr. David Tovey, Cochrane Library svarer i ett brev datert 4 oktober 2018, Professor Trygve Ottersen, fungerende direktør i Folkehelseinstituttet. Sak 17/10566, Follow up on the Cochrane review – Exercise therapy for chronic fatigue syndrome, dokumentnummer 3. [doknr3/p1feb2019]

Kate Kelland, journalist (2018). Exclusive: Science journal to withdraw chronic fatigue review amid patient activist complaints. Reuters, 17 oktober 2018 [crossref]

Kate Kelland, journalist (2019). Special Report: Online activists are silencing us, scientists say. Reuters, 13 mars 2019 [crossref]

Vink, Mark, and Alexandra Vink-Niese. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Oct 8;5(2):2055102918805187. doi: 10.1177/2055102918805187.

[pubmed/PMC] [Crossref]


Utsagn/diskusjon 3: Sharpe om PACE-studien

Journalist Kate Kelland, skriver en omfattende trykksak for Reuters 13 mars 2019 med overskrift «Special Report: Online activists are silencing us, scientists say.». Noen utdrag:

«The emails, tweets and blog posts in the “abuse” folder that Michael Sharpe keeps on his computer continue to pile up. Eight years after he published results of a clinical trial that found some patients with chronic fatigue syndrome can get a little better with the right talking and exercise therapies, the Oxford University professor is subjected to almost daily, often anonymous, intimidation.»

«At the heart of the attacks on Sharpe, Wessely and other chronic fatigue treatment researchers is a study known as the PACE trial, which sought to evaluate the effectiveness of different types of therapy in CFS/ME patients.»

«Tuller himself hasn’t conducted or published any peer-reviewed clinical trials on CFS/ME. He has co-authored a critique of PACE.

His argument is that the therapies evaluated in the PACE trial are based on a misguided hypothesis that CFS/ME patients suffer from “unhelpful” beliefs that they have a biological disease, and that their symptoms of fatigue are made worse by deconditioning due to inactivity. He also says he thinks the trial’s methodology was flawed. The scientists involved reject those arguments.«

…og i journalist Andrew Anthony (The Guardian og the Observer) i trykksaken 28 juli 2019 «ME and the perils of internet activism», langer Sharpe enda mer ut:

«By 2011, and the publication of the Pace trial, Sharpe’s opponents were a lot more organised. “Social media had become more prominent,” he says. “A lot of this had been people in their bedrooms writing in green ink up until then.”»

«Tuller has called the Pace trial a “piece of crap” and says that his goal is to “completely discredit” it. He describes researchers who conduct psychological tests for treatment of ME/CFS as “insane”»

Publikasjonen i BMC Psycology (22 mars 2018), «Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT«, av Carolyn E. Wilshire med medforfattere, er en av flere publikasjoner basert på frigitt (Alem Matthees) deler av rådata-settene til PACE studien. Studien konkluderer med:

«These findings raise serious concerns about the robustness of the claims made about the efficacy of CBT and GET. The modest treatment effects obtained on self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases.«

Michael Sharpe, Kim Goldsmith og Trudie Chalder sender inn en respons/kommentar 31 juli 2018. Fagfellevurderingen av kommentaren ble ikke ferdigstillt og akseptert før 19 februar 2019 og valgte å publisere responsen 12 mars 2019, altså dagen før journalist Kate Kellands trykksak i Reuters. Sharpe et al konkluderer med:

«In this paper, we respond to the methodological criticisms of the trial and a reanalysis of the trial data reported by Wilshire at al. We conclude that neither the criticisms nor the reanalysis offer any convincing reason to change the conclusions of the PACE trial.»

Carolyn E. Wilshire og Tom Kindlon grundige respons på kritikken fra Sharpe var ferdigstillt og akseptert allerede 19 mars, men ble av ukjent grunn, ifølge Wilshire, ikke publisert på nett før 26 mars 2019.
Da med følgende konklusjon:

«While the arguments presented by Sharpe and colleagues inspire some interesting reflections on the scientific process, they fail to restore confidence in the PACE trial’s conclusions.«

.Hilda Bastian skrivde 8 februar 2019 en både oppklarende og kritisk artikkel om PACE, metastudier mm på PlosOne blog. Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much.

… og artikler i prestisjetunge Nature.

Amy Maxmen , 3 januar 2018. A reboot for chronic fatigue syndrome research.

med respons i fra Michael Sharpe,Trudie Chalder & Jon Stone, 31 januar 2018 «Don’t reject evidence from CFS therapies» som forøvrig var skrevet da manuskriptet på Cochrane IPD GET for ME, ikke akkurat tilfredstillte redaktører og fagfeller.

…mens Michael Sharpe fremdeles gir Tuller all skyld (til ære for Tuller sier nu vi da)

Notater/referanser for utsagn 3:

Kate Kelland, journalist (2019). Special Report: Online activists are silencing us, scientists say. Reuters, 13 mars 2019 [crossref]

Andrew Anthony, journalist. ME and the perils of internet activism. The Guardian, 28juli2019 [Crossref]

 

Wilshire, Carolyn E., Tom Kindlon, Robert Courtney, Alem Matthees, David Tuller, Keith Geraghty, and Bruce Levin. Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC Psychol. 2018 Mar 22;6(1):6. doi: 10.1186/s40359-018-0218-3. [pubmed/PMC] [Crossref]

Sharpe M, Goldsmith KA, Chalder T. The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al. BMC Psychol. 2019;7:15.[Crossref]

19feb2019 kommentar akseptert (innlevert 31juli2018)
12mars2019 publisert

Carolyn E. Wilshire & Tom Kindlon. Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings. BMC Psychol. 2019;7:19.[Crossref]

19mars2019 kommentar akseptert (innlevert 7mars2019)
26mars2019 publisert

 

Hilda Bastian. Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much | Absolutely Maybe:. PlosOne blog,  8 februar 2019. [Crossref]

Amy Maxmen (2018). A reboot for chronic fatigue syndrome research. Nature 553, 14-17. doi: 10.1038/d41586-017-08965-0


Utdrag/Diskusjon 4: «Online activists are silencing us, scientists say.» går bakteriofagisk, retroviral, viral og karsinogent.

Journalist Kate Kelland, skriver en omfattende trykksak for Reuters 13 mars 2019 med overskrift «Special Report: Online activists are silencing us, scientists say.»

Noen av disse er:

13mars2019: New York Post ved Reuters «Chronic fatigue activists are trying to silence us: researchers »
14mars2019: Medscape Reuters/kate Kelland

I The Times ble ME-pasienter og sympatisører stygge ekle slimete Troll

16mars2019 The Times «Trolls force Oxford expert to stop research into ME»

18mars2019:David Tuller,DrPH «Trial By Error: My Letter to Kate Kelland«

Journalist drPH og Senior Fellow in Public Health and Journalism David Tuller UC Berkely_skriver brev til journalist Kate Kelland

18april2019: David Tuller,DrPH «Trial By Error: A Reuters Update«

På hjemmebane:

28april2019: Eivind Meland kommentar «Kjønnsvariasjon og ansvar» på Wæhre A, Schorkopf M. «Kjønnsvariasjon, medisinsk behandling og vårt ansvar». Tidsskr Nor Legeforen. 2019;139(7):590-1.

En må da undres over hvordan i alle dager klarte Professor emeritus og allmennlege Eivind Meland og Tidsskriftet å gå fra tema om kjønnsinkongruens til «langt på vei latt seg terrorisere av proponenter for ME/CFS til å underslå at der finnes virksom behandling«???

«Jeg savner en ansvarsplassering hos dem som har revidert ICD: Verdens helseorganisasjon. Med hvilken rett kan Verdens helseorganisasjon konstruere nye sykdomskategorier uten at det foreligger forskning på konsekvenser av slike diagnoser og tilhørende behandling?

Er det ikke betimelig at helseminister Bent Høie saksøker WHO for å dekke den merkostnad som slik udokumentert sykdomsinflasjon medfører i primær- og spesialisthelsetjenesten?

Jeg savner også en refleksjon om hvilke sosiokulturelle strømninger en slik selvbestemt sykdomsinflasjon kan være uttrykk for. Er den liberale individualisme nå opphøyet til et uangripelig aksiom for vår helsetjeneste? Så langt jeg har forstått helseministeren er det ikke dette han mener med «pasientens helsetjeneste».

Helsevesenet har langt på vei latt seg terrorisere av proponenter for ME/CFS til å underslå at der finnes virksom behandling for tilstanden.

Jeg er klar over at der er vanskelige faglige og etiske valg knyttet til kompleks sykdom og lidelse, men må vi ikke som fagpersoner evne å stå moralsk oppreist for i noen tilfeller å avvise pasienters forventninger om diagnoser og dysfunksjonelle selv-fortolkninger?

Jeg mener svaret må være «ja». Alternativet er at helsevesenet utvikler seg til et permissivt undertrykkelsesapparat i «det godes tjeneste».»

– the end –

22juli2019 «The Dark Side of Social Media Activism in Science«, Psychology Today av Vanderbilts Stephen Camarata PhD. Camarata klarte derimot å referere Kelland/reuters med hele tre forskjellige referansenummer i en og samme tekst!


Utdrag/diskusjon 5: Michael Sharpe og Etikk

Medical Humanities omtalte første gang på blogg 29mai2019 og twitter, om at Sharpe og Greco hadde skrevet en artikkel om kontrovers, moralitet og paradoks!?

«Chronic Fatigue Syndrome and an Illness-Focused Approach to Care: Controversy, Morality, and Paradox» eller «Mind, Medicine and Morals: A Tale of Two Illnesses» Blog Medical Humanities av Chris Pak

Deler, altså første versjon av artikkelen, ble publisert 18 juni 2019 og full versjon ikke før 9 juli 2019. Dette tiltross for at artikkelen var akseptert 10 april 2019. Hovedartikkelen refererer selvfølgelig til Kate Kellands trykksak i Reuters 13 mars 2019.

Om Medical Humanities står der:

«Medical Humanities presents the international conversation around medicine and its engagement with the humanities and arts, social sciences, health policy, medical education, patient experience and the public at large. Led by Dr Brandy Schillace, the journal publishes scholarly and critical articles on a broad range of topics. These include history of medicine, cultures of medicine, disability studies, gender and the body, communities in crisis, bioethics, and public health.

For information about Medical Humanities Editor-in-Chief Dr Brandy Schillace and her editorial team, please refer to the Editorial Board page.

Medical Humanities is an official journal of the Institute of Medical Ethics

med videre: The Institute of Medical Ethics (IME)

«is a charitable organisation dedicated to improving education and debate in medical ethics. The IME is founder and co-owner of the Journal of Medical Ethics (JME) a leading international journal reflecting the whole field of medical ethics.

Our mission is «promoting and supporting the impartial study and understanding of medical ethics and its integration into clinical practice through education, research, and publication». We are currently involved in organising conferences, providing grants to students interested in medical ethics and in a project to support and develop medical ethics and law teaching in UK medical schools.»

Diane O’Leary, Adjunct Full Professor, Course Chair in Philosophy, University of Maryland, har skrevet noen publikasjoner om samme tema. Den siste i Journal of Medical Ethics blog , 5mars2019 med tittel «It’s Time to Pay Attention to «Chronic Fatigue Syndrome»
For andre publikasjoner kan du finne her.

Kommentar: Det må være lov til å si at laaangtiiiiidsuuuudraaaagning for oppmerksomhets-syke, e en smule drøyt!

Notater/referanser for utsagn 5:

Chris Pak, 29mai2019. «Chronic Fatigue Syndrome and an Illness-Focused Approach to Care: Controversy, Morality, and Paradox» eller «Mind, Medicine and Morals: A Tale of Two Illnesses» Blog Medical Humanities. [Crossref]

Sharpe M, Greco M. Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox. Medical Humanities 2019;45:183-187. (Accepted April 10, 2019) [Crossref]

Første versjon ble publisert 18juni2019 og full versjon 9juli2019


Oppsummering:

M Sharpe_holdning for CFS og FM_textbook for psycosomatic med 3 ed_6aug2018

…men har virkelig Michael Sharpe sluttet å «forske» på ME?

…og har virkelig journalist David Tuller skylden for alt?

…er virkelig ME-feltet «Toksisk» for forskere?

Nei, tja, og nei (se her)


FØKKA WONDERLAND!!!

 

5 kommentarer om “På ME-fronten: Alice, Mad Hatters and down the Rabbithole

  1. Undrende

    Så flott at du har laget denne oversikten. Det er slett ikke sant at jeg var dekondisjonert da jeg ble syk. ME tvang meg gradvis i senk og det var helt umulig å opprettholde funksjonsnivået på et basisnivå da jeg havnet så lavt på skalaen. Hele tiden i etterkant ligger jeg så tett på tålegrensa som jeg tåler mht svingninger. Kan øke litt innimellom og reduseres uforståelig igjen til et lavere nivå f.eks etter en forkjølelse. I praksis er en pasient som nærmer seg åttiårene og med en alvorlig hjertesvikt i veldig god form sammenlignet med meg, og kan opprettholde det samme nivået etter en forkjølelse. Hvis det å motsi en riv ruskende gal påstand oppleves som toksisk, så er jeg en skyldig pasientaktivist jeg også. Jeg aksepterer ikke å få helsa mi ødelagt bare for å gjennomføre og tilfredsstille andre mennesker sine feilvurderinger og påståelighet uten at de tar hensyn til konsekvensene av det som allerede er gjort. Det er ingen forbedringshindrende tankefrykt-hypotese jeg holder meg til for å unngå forverring, men erfart kunnskap om hva jeg blir verre av som ingen kan benekte eller bortforklare. Jeg forventer at helsepersonell viser respekt nok til å endre kurs og opplyse om konsekvenser når behandlinger forverrer. Tåler de ikke at pasienter sier fra om tapt helse ved konkret behandling og at pasienter ber om endring av offentlige uttalelser som følge av dette, så er det kanskje like greit at noen forlater fagfeltet.

    Liker

    1. Heia 😀 og tusen takk for kommentar. Det setter æ pris på 😉

      Ja det ble en sånn passelig oversikt, faktisk…

      Som du sier, det at du ikke kjenner deg igjen i disse sykdomsforklaringene som fremsettes, nettopp fordi du gjennom egen kunnskap og erfaring over tid finner ut at de ikke stemmer. Akkurat som flere tusen andre pasienter, meg selv inkludert.

      Det samme gjelder jo det mentale og kognitive. Om vi skulle gått rundt med konstant emosjonellt høytrykk, ville vi alle forbli i mørterommet. Det er fysiologisk umulig, selv for friske.

      En som virkelig tror ME skyldes dekondisjonering og samtidig kaller ME og PEM for «Milady», hvor på fagkunnskapen burde være innsikt, men dog ei, er Gundersen (forsker ikke på ME). Som denne på twitter:

      [embed]https://twitter.com/KristianGunder/status/1158356064863232000[/embed]

      x Det er lov å undre seg at en forsker og biolog trur mer på en «klikk-beit» journalist som fråtser.
      x Det er grunn til å tro at de færreste faktisk har lest publikasjoner der hypotesene fremstilles.
      x folk er dårlig på fakta-sjekking.

      Ja æ skulle ønske at vi nu i 2019 hadde kommet lengre i forståelse og at normal legebehandling kunne være som andre i befolkningen. Om Sharpe har vært på krigsstien i det siste, så er det virkelig ikke bedre her på berget heller. Det er umåtelig og dypt sjokkerende.

      Take care og gode tanker om bedre dager 😉

      marit

      Liker

      1. Undrende

        Takk for det. Det gikk ca 14 år før jeg fikk diagnose og jeg visste ingenting om ME eller miljøet i ca 12 år så jeg kunne ikke bli påvirket av noen sine hypoteser. Da jeg leste om det for første gang ble jeg glad for at noen endelig visste hva jeg snakket om. Det provoserte meg at noen bagatelliserer symptomer som om det bare er å overse dem. Jeg prøvde i praksis ut teoriene om å overse symptomer i over 10 år. Det eneste positive jeg oppnådde var å se at jeg ikke eier symptomfrykt. Jeg unner ingen å oppleve at muskulatur svikter så det ikke er mulig å stå på beina og de smertene som følger med i etterkant. Jeg opplevde at det er blank løgn at å pushe grenser kan gi bedring, da har de som svarer det og jeg ikke samme sykdom. At de kan ha blitt friskere for så å pushe grenser til økt nivå er en helt annen sak og er jo helt normalt å gjøre med all bedring.

        Jeg er bittelitt bedre nå. Fulgte samme dagsplan som Trine Helen Stenestø la ut kombinert med Kreyberg sine regler som også hjalp meg til å komme over det verste og pluss noen erfaringer jeg gjorde om hva som gir økt varmeproduksjon eller stopper den. Men tilfriskning er det ikke i nærheten av. Bare mindre uvel nå, som gir bedre dager i ro.

        Forbedringen det er snakk om på vanlige dager er å greie å dusje på gode dager uten å måtte ligge i timevis etterpå for å greie å stå oppreist igjen, dra på kjøpesenter et par ganger per år. Kunne lese en time i motsetning til å bli ekstremt kvalm etter fem minutter. Små endringer der kroppen kjennes som den jobber lettere pga hvileavlastningen og pga kontrollen jeg har over tidsbruk, dagsform og belastning. Har aldri fått tilbake det funksjonsnivået jeg hadde i starten av sykdommen pga de feile rådene jeg fikk om at aktivitet er trygt og symptomene bare sitter i hodet.

        Folk må velge selv hva de vil tro på. De trenger ikke tro på at det som skjer med ME er reelt, de kan tillegge tanker og holdninger så mye de vil. Dessverre kan det bli sånn at de ikke kjenner igjen sykdommen om de selv blir rammet og må følge det samme opplegget som alle andre uten mulighet til å begrense skader så tidlig som mulig, og som meg forstå det for sent. Konsekvensene det ble for meg er som de er og jeg skulle ønske det ikke skjer med flere, men det er ikke lett å få folk til å forstå. Whitneys hilsen er så rørende og motiverende. Om noen få måneder har jeg vært syk i 20 år og jeg begynner å føle at det er lite som sjokkerer meg mer selv om det som skjer er sjokkerende. Det er så mye håp med den forskningen som skjer nå, og som pusler brikker på plass på en gjenkjennelig måte. Gleder meg til å forstå mer.

        Ta godt vare på deg selv du også. Og takk for at du bidrar så mye med det du skriver. Det og vinklingen din har betydd masse for meg for å bearbeide alt det ubegripelige som skjer mtp holdningene folk viser. Godt at du finnes og har hjulpet meg så mye mer enn du har visst selv.

        Liker

  2. strong>Respons:

    Lubet S, Tuller D. The concept of ‘illness without disease’ impedes understanding of chronic fatigue syndrome: a response to Sharpe and Greco. Medical Humanities Published Online First: 01 June 2020. doi: 10.1136/medhum-2019-011807
    Link: https://mh.bmj.com/content/early/2020/06/01/medhum-2019-011807

    [Steven Lubet (Law, Northwestern University, Chicago, Illinois, USA) og David Tuller (University of California Berkeley School of Public Health, Berkeley, California, USA)]
    ***
    Abstakt/sammendrag:
    In a recent article in Medical Humanities, Sharpe and Greco characterise myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as an ‘illness without disease’, citing the absence of identified diagnostic markers. They attribute patients’ rejection of psychological and behavioural interventions, such as cognitive–behavioural therapy (CBT) and graded exercise therapy (GET), to a ‘paradox’ resulting from a supposed failure to acknowledge that ‘there is no good objective evidence of bodily disease’.

    In response, we explain that understandings about the causes of and treatments for medical complaints have shifted across centuries, and that conditions once thought to be ‘psychosomatic’ have later been determined to have physiological causes. We also note that Sharpe and Greco do not disclose that leading scientists and physicians believe that ME/CFS is a biomedical disease, and that numerous experts, not just patients, have rejected the research underlying the CBT/GET treatment approach.

    In conclusion, we remind investigators that medical classifications are always subject to revision based on subsequent research, and we therefore call for more humility before declaring categorically that patients are experiencing ‘illness without disease’.

    Liker

    1. Sitater/quotes:

      «In a recent essay in Medical Humanities, Professors Michael Sharpe and Monica Greco assert their belief that chronic fatigue syndrome (CFS) is an ‘illness without disease’, best treated with psychological and behavioural interventions, because ‘doctors can find no good objective evidence of bodily disease to account for it’.1 At the same time, Sharpe and Greco discount the prospect ‘that given enough time and resources, the disease will surely be found’, thereby repeating a classic and timeworn misapprehension. In fact, many medical conditions that had once been attributed to psychological or other non-physiological factors were later determined, following rigorous research, to have been biomedical in nature all along. Nonetheless, Sharpe and Greco express dismay at the resistance of patients to certain strictly rehabilitative therapies, such as cognitive–behavioural therapy (CBT) and graded exercise therapy (GET), as Sharpe had done for many years.»

      «As we will explain, however, patients suffering from CFS (also called myalgic encephalomyelitis or ME) do not reject Sharpe and Greco’s preferred psychological and behavioural treatments because they refuse to accept the nature of their ‘illness without disease’, but rather because the research base for those therapies is deeply flawed and unreliable.»
      —-

      «The Sharpe-Greco account of ‘illness without disease’ adds to the extensive body of literature that has emerged in recent years around the concept of ‘medically unexplained symptoms’ (MUS). This category comprises other names including ‘persistent physical symptoms’ and ‘bodily distress disorder’. Psychiatrists call some such presentations ‘conversion disorders’. The Diagnostic and Statistical Manual-V, the discipline’s essential reference, now adds ‘functional neurological symptom disorder’ as an alternative, while also replacing ‘somatization’ with ‘somatic symptom disorder’.»

      «Each of these iterations may have somewhat different definitional boundaries, but they all refer to symptoms as well as conditions, such as ME/CFS, for which science has not as of yet been able to identify a pathophysiological cause or ongoing disease process. In the UK, for example, the Improving Access to Psychological Therapies programme places ME/CFS in the MUS basket. 3 It is a mistake, however, to assume that these sorts of categories—MUS, somatic symptom disorder, ‘illness-without-disease’—are static or definable, rather than fluid and conditional, given that medical knowledge is always dynamic and in flux. Yet that is how Sharpe and Greco appear to approach and analyse the issues surrounding ME/CFS.»

      «History is replete with examples of ailments attributed to all sorts of phenomena, only to have a biological mechanism ultimately identified as the cause. Over the centuries, many presumed causes of sickness were supernatural, like witchcraft or divine retribution. Epidemics were often attributed to poisonous ‘miasmas’. Hypothesised internal triggers for poor health have included unbalanced ‘humours’, emotional disturbances and personality traits, often presented as related to traditional gender roles or sexual trauma.»

      «The mid-20th century witnessed the emergence of the field of ‘psychosomatic’ medicine, with its focus on physical disorders thought to have psychological roots. In 1950, the eminent psychiatrist Franz Alexander identified what were referred to as the ‘holy seven’ psychosomatic disorders: essential (or primary) hypertension, thyrotoxicosis, bronchial asthma, rheumatoid arthritis, ulcerative colitis, peptic ulcers and neurodermatitis.»

      «A 1980 description of ‘the psychosomatic theory of asthma’ demonstrates the kinds of results-oriented, circular reasoning deployed to devise psychological explanations for these conditions:

      [The theory] regards asthmatic breathing as a reaction of a predisposed personality structure (partly hereditary, partly acquired during a youth situation in which overprotection by a domineering parent played a large role), to an ambivalent conflict with a key figure. The resulting frustration is not acted out by aggressive, flight, or depressive behaviour, but inhibited; thereby the motoric and verbal discharges are displaced into (substituted by) a respiratory behaviour pattern, which is characterised by an abnormally forceful contraction of the abdominal muscles during the expiration.

      The hypothesised link between conflict with an authority figure and a respiratory pattern that could cause asthma is certainly imaginative, but it is entirely speculative and impossible to prove or falsify.»
      —-

      «Professors Sharpe and Greco no doubt understand that not every potential biomedical disease can be identified through currently available testing. They must surely be aware that conditions such as asthma, peptic ulcers and rheumatoid arthritis are no longer viewed or treated as psychosomatic disorders. Nonetheless, their essay appears to indulge an assumption that the absence of a definitive test is sufficient to disallow the presence of what they call ‘disease’. As Sharpe and Greco see it, this lack of concordance between self-reported symptoms and known disease biomarkers confronts patients with a seeming paradox. ‘How can an illness be patently real, sometimes severely so, when doctors can find no good objective evidence of bodily disease to account for it?’ they write. ‘How can both of the propositions—‘this is a real illness’/‘this is not a disease’—be simultaneously valid and true?’»
      —-

      «Sharpe and Greco do not question whether their second proposition—‘this is not a disease’—is the only possible reason for the lack of ‘good objective evidence’. The obvious alternative reason could be that science has not yet caught up with the disease under investigation. Sharpe and Greco, however, find this possibility unconvincing and dismiss it as wishful thinking. As they write:

      there will be those who seek to escape the paradox by denying the second proposition, insisting that the illness is associated with a disease and that the lack of evidence for this is only provisional… The modernist narrative of progress and discovery in which medicine itself is strongly invested reinforces this line of argument.

      «Thus, as their abstract explains, they are perplexed by the ‘controversial rejection [of CBT/GET] by some people whose fatigue is not associated with an established disease (chronic fatigue syndrome or CFS)’.»

      «Relying on the ‘not-a-disease’ perspective, Sharpe and Greco then set out to explain the apparently self-defeating reluctance of patients with ME/CFS to accept a set of psychological and behavioural interventions focused on reducing the symptom of fatigue rather than on addressing underlying disease mechanisms. They criticise society’s widespread adherence to the ‘reductionism of the biomedical model’, implying that patients have been influenced by a ‘cultural prejudice against illness-without-disease’. They do not acknowledge that perhaps patients have been influenced by their own close reading of the relevant research as well as their awareness from their own and others’ experiences that the proffered therapies do not work in most instances and cause actual harm in others. Indeed, patients with ME/CFS have consistently reported high rates of adverse effects from GET and CBT.»
      —-

      «Here is what Sharpe and Greco write about the symptom of fatigue in cancer as well as ME/CFS:

      The fatigue in both these cases has been found in research studies to be lessened by illness-focused rehabilitative treatments that include a talking treatment called cognitive–behavioural therapy (CBT) and a behavioural treatment called graded exercise therapy (GET).
      —-

      «Unmentioned is the long-standing hypothesis previously advanced by Sharpe and his colleagues that the symptoms of ME/CFS are perpetuated by the combined impact of ‘unhelpful’ illness beliefs and deconditioning, and that CBT and GET can therefore lead to ‘reversal’ and ‘recovery’.7 Those sweeping claims of a cure contrast significantly with the now much-diminished suggestion that the treatments are simply means of lessening fatigue and attaining ‘a useful improvement’ for a troubling symptom.»

      «Also unmentioned in the text is the salient detail that Sharpe himself was a lead investigator of the PACE study, the largest trial to examine the treatments for ME/CFS that he and Greco advocate.8 The PACE investigators reported in The Lancet that CBT and GET reduced self-reported fatigue and improved self-reported physical function. Sharpe and Greco do not acknowledge, however, that the study’s objective measures failed to match the subjective results, with no clinically significant improvements. They do not cite published research that has highlighted the PACE trial’s outcome-swapping and refuted the core findings.9 And they ignore a 2018 open letter to The Lancet, signed by more than 100 scientists, clinicians and other experts, which condemned the PACE study’s violations of methodological principles and demanded an independent investigation of the trial.»

      «Sharpe and Greco likewise do not mention the 2015 report from the US Institute of Medicine (now the National Academy of Medicine), which found that ME/CFS is a ‘serious, chronic, complex, and multisystem disease’ (emphasis added)., 11 Nor do they mention that the US Agency of Healthcare Research and Quality found little or no benefit to CBT and GET in patients identified as having the condition through case definitions that require multiple symptoms, not just fatigue.12 They do not acknowledge that the US Centers for Disease Control and Prevention dropped its own recommendations for CBT and GET for ME/CFS more than 2 years ago.13 They do not disclose that serious biomedical research on ME/CFS is progressing at major universities in a number of countries, including Stanford, Columbia and Cornell, among other institutions in the USA.»
      —-

      «In other words, it is not only patients who challenge the psychological and behavioural paradigm championed by Sharpe and Greco. Much of the larger scientific community no longer accepts the findings of the PACE trial—and, by extension, other studies that appear to support the CBT/GET approach but suffer from related flaws. Since Sharpe and Greco simply assume the validity of their model, they do not comprehend that patients reject it not because they fear ‘undermining the moral status of their illness’, or because they reject psychiatry as a form of treatment, but rather because the research base is fraught with unacceptable methodological lapses. Moreover, patients know that increasing activity levels can trigger severe relapses—a phenomenon called ‘post-exertional malaise’ or ‘exertion intolerance’ that is widely recognised as the cardinal symptom of ME/CFS. Stanford’s Ronald Davis, a world-renowned biochemist and geneticist who is currently investigating the disease, has noted that ‘if you exercise it gets worse’, and that prescribing exercise for patients with ME/CFS is therefore a ‘break of your Hippocratic Oath’.»

      «Given psychiatry’s long history of mistaken theories of disease causation, there is an almost wondrous grandiosity to Sharpe and Greco’s proposed solution to the supposed ‘paradox’ that troubles them. Rather than conceding that CBT and GET may be failed therapies for ME/CFS, and that biomedical research may ultimately hold the key, they instead call for ‘a major long-term change in thinking’ on the part of patients, clinicians and scientists who do not share their particular views regarding the ‘moral connotations of illness and disease’. The illness-without-disease concept can be a useful tool in exploring interactions between patients and healthcare systems, but only if it is recognised as highly contingent and subject to the admitted limitations of current knowledge. Contra Sharpe and Greco, patients would be better served by greater humility accompanied by an understanding that medical categories are always provisional and therefore subject to change with advances in research.»

      Liker

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