MD, PhD, FMedSci, FRSB, FRCP, FRCPEd.

The 30 most recent comments from all posts are listed below. Click on the post title to go to the comment on the post’s page.

  • Comment by Richard Rasker on So-called alternative medicine (SCAM) must be used for a long time before the effects kick in Tuesday 02 June 2020: 10:06 Are you awareness[sic] of your stupid contradiction Richard Are you aware of your rather limited insight, Lollipop? Please allow me to explain: 'effective' does NOT necessarily equal 'curative'. There is no cure for proctitis and Crohn's disease, but the symptoms of these conditions (mostly chronic inflammation, cramps and severe tissue damage) can be managed quite effectively with medication, thus enabling a life where people are not constantly living in pain, and constantly in need of a bathroom within a few dozen yards. Perhaps you have fallen for the old quackery sneer of "just suppressing symptoms"? If so, please explain what is wrong with 'just suppressing symptoms', especially if that is the best we can do. And please don't insult our intelligence by claiming that homeopathy or any other type of quackery can often provide a cure. They can't.
  • Comment by Dr Julian Money-Kyrle on The ‘Lightning Process’: implausible, unproven, hyped and expensive Tuesday 02 June 2020: 09:06 I was rather surprised to hear about Esther Rantzen in this context. When I was a teenager she used to host a very entertaining TV programme called "That's Life" which was dedicated to exposing frauds, scams and poor service of all kinds.
  • Comment by Dr Julian Money-Kyrle on So-called alternative medicine (SCAM) must be used for a long time before the effects kick in Tuesday 02 June 2020: 09:06 Lollipop, I don't see a contradiction. For instance diabetes is an incurable condition (except by pancreas transplant in certain circumstances) but insulin is real and effective.
  • Comment by Dr Julian Money-Kyrle on Acupuncture: much more than meets the eye! Tuesday 02 June 2020: 09:06 What was said is that “only around 10% of serious adverse drug reactions are reported to agencies that monitor drug safety.” Said where? I can't find a link. In the UK we have a system whereby doctors can report adverse drug reactions by filling in a yellow card which is sent to the monitoring agency. The purpose is to identify new, rare or unexpected reactions so that other prescribers can be alerted. However, only a small proportion of actual reactions are reported, because most adverse drug reactions are not unexpected. It would be a complete waste of everybody's time (including the monitoring agency's) if I reported every time somebody on chemotherapy dropped their white blood count to a dangerous level, or even every time somebody had an anaphylactic reaction to penicillin, as that would be neither new nor surprising, and is not the purpose of the monitoring system. Since I don't know what system (or indeed what country) you are referring to, I don't, of course, know if this is the explanation for the "only around 10%" to which you refer.
  • Comment by Lenny on The ‘Lightning Process’: implausible, unproven, hyped and expensive Tuesday 02 June 2020: 08:06 May I suggest to all the folks here that SBM pretends to know how to treat M.E. You can suggest all you like, RG but it doesn't make it true. As far as I am aware, SBM makes no such claims.
  • Comment by Andrew Kewley on A totally useless therapy for benign and malign conditions – where is the difference? Tuesday 02 June 2020: 08:06 Zebra, this is what I was talking about: https://edzardernst.com/2020/06/the-lightning-process-implausible-unproven-hyped-and-expensive/
  • Comment by Edzard on Acupuncture: much more than meets the eye! Tuesday 02 June 2020: 05:06 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC48133/ https://pubmed.ncbi.nlm.nih.gov/14718331/
  • Comment by Lollipop on So-called alternative medicine (SCAM) must be used for a long time before the effects kick in Tuesday 02 June 2020: 03:06 Nasty and arrogant comment , "incurable condition" before "returned to real, effective medication". Are you awareness of your stupid contradiction Richard?
  • Comment by Trude Schei on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 22:06 The project description is not finalised, but an invitation with a project description was sent to all the municipalities that were invited to praticipate. http://opengov.cloudapp.net/Meetings/AHK/Meetings/Details/397489?agendaItemId=205095&fbclid=IwAR375P_pCnlL0p_18PobemYEAwT0ds1qX0RVMygdzLFtJ7JcdKuELRyMbDI They want new patient "ho do not identify themselves with the disease (ME). The deisgn is a stepped wedge, wherehalf of the patients receives treatment while the other half - the control group is placed on a waiting list for ten weeks before they receive treatment. In other words, after 10 weeks you have no control group. It is not clear what they are going to measure, but there is something about looking at work participation after two years. The project description contains the names and affiliations of everyone involved in the study. There are ethical questions, among them the question og harm. A publicly funded Norwegian agency, NAFKAM, a kind of watchdog for alernative treatments, have received numerous reports of ME patients getting worse from doing what they learn on LP courses. Users surveys done by the Norwegian ME Association consistently show that most havae no effect from LP, but that more ME patients experience harm than those who recover. The SMILE study you mention above is cited by the researcher on the new study as evidence that LP does not cause harm.
  • Comment by RG on Acupuncture: much more than meets the eye! Monday 01 June 2020: 21:06 @EE Wrong wrong wrong.... don't twist the fact to make it say what you want. What was said is that "only around 10% of serious adverse drug reactions are reported to agencies that monitor drug safety." So likely the problem is much bigger than is even being acknowledged. C'mon professor.... don't play dumb.
  • Comment by Edzard on Acupuncture: much more than meets the eye! Monday 01 June 2020: 20:06 Ghosh, that's unusual! ~10% of all patients have unwanted side effects
  • Comment by Marcia Steingraber on Acupuncture: much more than meets the eye! Monday 01 June 2020: 19:06 Interesting article. None of my patients have ever had any negative side effects. Maybe the study mentioned turned out to be a malpractice case?
  • Comment by RG on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 17:06 How much evidence of bad medicine do we need ? https://theconversation.com/as-pharmaceutical-use-continues-to-rise-side-effects-are-becoming-a-costly-health-issue-105494 https://www.consumerreports.org/prescription-drugs/too-many-meds-americas-love-affair-with-prescription-medication/ https://www.nbcnews.com/health/health-news/tainted-drugs-ex-fda-inspector-warns-dangers-u-s-meds-n1002971
  • Comment by Edzard on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 17:06 thank you for yet another demonstration of your weird oppinions
  • Comment by Sten Helmfrid on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 17:06 Nina E. Steinkopf has been involved in the debate about the Lightning Process studies. She is currently working on a translation of the project description to English. In the mean time, she is referring to the following two web pages: https://melivet.com/2020/04/30/omstridt-lp-studie-er-ikke-godkjent-enda/ https://melivet.com/2020/02/15/helsemyndigheter-stotter-forskning-pa-kontroversiell-alternativbehandling/ Note that there are links to English translations at the top of the pages.
  • Comment by RG on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 16:06 @EE and that justifies SBM ? ..... what science pretends to have a solution when they don't know the cause ? Furthermore, they have no cure. Yup, it justifies finding whatever works for the patient.
  • Comment by peggy-sue on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 16:06 I looked into LP about a year after I first became ill, so 16 years ago. It turned up on a web search. It did not make any sense to me. I contacted Amir Norris and had correspondence with him, asking what these practitioners think is the trouble. I was told it was hyperarousal, adrenalin surging all the time and not being turned off. Ok. Follow that reasoning. High adrenalin (via corticotropins) leads to high blood pressure. pwME have low blood pressure. Adrenailn doesn't surge everywhere like mad when stressed and anxious, it's cortiocotropins that do, and overstimulation of those leads to a breakdown in the feedback mechanism, resulting in depression. Dexamethasone suppressor test etc. (going back vaguely to my memories of OU studies in '94) but whatever, their simplistic theory did not fit in with my knowledge, or my low blood pressure. They'd just pinched some sciencey-sounding words. I decided not to bother giving him any money. Or Mickey Mouse therapy, which is precisely the same sort of garbage. I have yet to see anybody picking LP up on this mysterious lack of high blood pressure in sufferers.
  • Comment by Edzard on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 16:06 ... and that justifies any form of quackery?!?
  • Comment by RG on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 16:06 May I suggest to all the folks here that SBM pretends to know how to treat M.E., yet they admit they do not know what causes it. There is no treatment known, they treat symptoms of the illness that they don't know. Ill patients.... please. Find the solution that works for you. There is not correct remedy.
  • Comment by Aslaug on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 15:06 Since the name on the Research council's page isn't Kennair I thought I'd give some more info. The project is a "public sector Ph.D" which means public actors, in this case a Centre for Development of Institutional and Home Care Services in Viken muncipality, can apply for funding if they have a candidate and a degree-conferring institution (here NTNU). There are supervisors both from the public actor and from the university involved. The names of the people involved and their institutions can be found in the first page of the project description as it was sent to the research council: https://lillemeglede.files.wordpress.com/2020/05/prosjektbeskrivelse.pdf Besides those mentioned on the first page, some others are mentioned in section 3.2 "Aktører" (a quick translation would be "acting bodies"): Norwegian institute of public health, professor Per M. Magnus (same as on the first page) University of Bristol, professor Esther Crawley Recovery Norge*, Henrik Vogt M.D. In section 3.3 "Støttespillere"/supporting bodies are these mentioned: Norwegian institute of national health, Geir Stene-Larsen and Morten Græsli Competance center for ME/CFS Norway, Ingrid B. Helland** *Recovery Norge is a small patient/user organization of patients that have recovered using mental health techniques like LP. Some of its users are LP coaches themselves. **A large campaign to change the board of the competance center failed in Norway two years ago. The reason for this campaign was in part that the center has given support of the view that ME/CFS can be treated with methods such as these.
  • Comment by Momof3 on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 14:06 I have M.E. and have had it for 13 years. I did the Lightning Process several years ago. I believed it could and would work. It didn’t. It left me disappointed and in debt. Many people who do it and don’t see improvement, blame themselves. You are told that you are not applying it correctly or often enough or you aren’t believing in the process enough. Patients end up being ridden with guilt and are often left with a sense of deep failure. I stopped short of that, fortunately. I did exactly what I was told to do and it categorically did NOTHING for me. In hindsight, if this method were as successful as it claims to be, then there’d be thousands of people on social media singing about it from the rooftops or even mountain tops! There aren’t. There are a select few. We do not know that these people had M.E. Some say they did and are adamant that the Lightning Process helped them. Do a sweep of Instagram and search the hashtag. Many people set up accounts when they embark on the process and slowly but surely the path is mostly always the same. Convince themselves they are getting better and stronger. Do a few new activities. Slip back. Blame themselves. Try to apply the approach with renewed enthusiasm. Run on adrenaline. Then their accounts drop off and go quiet. They then re-emerge and lo and behold, they are struggling once more - sometimes worse off due to pushing themselves too much for the past several months. I have watched accounts like these very carefully. They tell my story. Amongst these, there is one person I know who believes she recovered using the L.P. but she never terms her illness M.E. It was ‘burnout.’ I’m not going to disparage the Lightning Process. I am telling you my experience of it. I am sharing with you what I have learned of other people’s experiences with it, as I have witnessed through their online accounts. That is all friends, Take good care of yourselves. Stay strong.
  • Comment by Marie Barnfield on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 13:06 I very recently heard Esther Rantzen on BBC radio, and she referred to her daughter still having chronic fatigue syndrome or ME. Similarly, in a recent article in The Sun Martine McCutcheon is no longer claiming to be cured, but says she’s is much better as she is pacing herself and concentrating on her home life. In other words, she would seem to have finally ditched the LP methods and come to terms with her illness.
  • Comment by Ingo on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 13:06 The study is at university of Trondheim, Prof. Leif Edward Ottesen Kennair
  • Comment by cassava7 on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 13:06 There is more info on this thread on the Science for ME forums: https://www.s4me.info/threads/lightning-process-study-underway-in-norway.14876/ "The study will be done in cooperation with the Norwegian Institute of Public Health and with support from the Directorate of Health and the National Competence Service for CFS/ME. 20 municipalities in Viken are invited to participate. The patients enrolled will be diagnosed by the Canadian criteria. The LP-seminar will be led by research fellow Live Landmark. [...] Professor Wyller will be research associate and says that according to the studies on similar techniques no harm has been proven, and that they believe the benefits are much larger than the disadvantages." Prof Wyller is also senior author on a recent study in BMJ Paediatrics Open on "CBT combined with music therapy" for adolescents with post-EBV chronic fatigue [1]. An open letter to the editor of the journal regarding the study has been written by David Tuller and co-signed by multiple researchers [2]. Along with Michiel Tack's response to the study [3], it highlights serious methodological errors that may be repeated in the upcoming LP study. Worth a read. EDIT: The Canadian consensus criteria [4] for ME/CFS are agreed to be valid both for clinical and research purposes, considering that they require post-exertional malaise (the hallmark feature of ME/CFS). [1] Malik S, Asprusten TT, Pedersen M, et al. Cognitive–behavioural therapy combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study. BMJ Paediatrics Open 2020;4:e000620. doi: 10.1136/bmjpo-2019-000620 [2] Tuller D (2020). Trial By Error: Letter to BMJ Paediatrics Open About that CBT-Music Therapy Study. Virology Blog. https://www.virology.ws/2020/05/31/trial-by-error-letter-to-bmj-paediatrics-open-about-that-cbt-music-therapy-study/ [3] Tack M (2020). Inaccuracy in reporting CEBA part II. https://bmjpaedsopen.bmj.com/content/4/1/e000620.responses [4] https://me-pedia.org/wiki/Canadian_Consensus_Criteria
  • Comment by Aslaug on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 13:06 The study is to be conducted by a phD candidate, Live Landmark, who is herself an LP coach. The university which she is a candidate is NTNU, and her main supervisor at NTNU is Leif Edward Ottesen Kennair. One co-supervisor will be Vegard Wyller from University of Oslo, and Esther Crawley (the author of the SMILE trial) has also been mentioned as someone who will help with the study. Funding has been received from the research council of Norway (https://prosjektbanken.forskningsradet.no/#/project/NFR/312152/Sprak=en) and will also be supported by certain muncipalities if I remember correctly. In the application to the research council LP is not mentioned by name, it is called a "three day intervention". Vegard Wyller recently published a study on CBT together with music therapy as a treatment for postviral fatigue in adolescents, with a control group that received "treatment as usual" which in effect is no treatment at all. The trial is registered as a full scale randomized trial, but published as a feasability study. The primary outcome was average steps/day three months after treatment, and the intervention group did worse than the controls. However, they did show tendencies of improvement on two subjective secondary outcomes that are not included in the preregistration of the trial nor the statistical analysis plan. These two subjective measurements are highlighted in the conclusions, while the results of the primary outcome is not mentioned. One of the peer reviewers stated he did not read past the abstract. Michiel has written a more in-depth analysis about the problems with this study that can be read here: https://bmjpaedsopen.bmj.com/content/4/1/e000620.responses Thanks for writing about this.
  • Comment by cassava7 on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 13:06 Thank you Dr Ernst. You may be interested in reading a paper by Phil Parker & al (the inventor of LP): "Understanding the Lightning Process Approach to CFS/ME; a Review of the Disease Process and the Approach", published in the "Journal of Experiential Psychotherapy". Here is a link: https://jep.ro/images/pdf/cuprins_reviste/82_art_2__v.pdf I would appreciate your thoughts on the bold claims made by Parker in this article... if you don't mind going through lengthy "explanations" and proposed "links" between different concepts, that are not backed by any data at all.
  • Comment by DC on Vaccine hesitancy and so-called alternative medicine (SCAM) Monday 01 June 2020: 12:06 Ray....“...the medical community and pharmaceutical companies overstate their abilities from time to time,...” Or hide their inability? “Interestingly, US3 and Danish5 studies, respectively, report that 45% and 86% of physicians use placebos.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3386649/ “The proportion of physicians who reported having used placebo (ever used or used with a minimum frequency of once a year) varied between: 17% and 80% for pure placebos (six studies); between 54% and 57% for impure placebos (two studies); and between 41% and 99% if both pure and impure placebos were addressed...” https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-8-15
  • Comment by Edzard on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 12:06 Does anyone know who is going to conduct the study, who is funding it, etc?
  • Comment by Michiel Tack on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 11:06 Thanks for writing about this. My main concern is that the Norwegian study will have a similar problematic trial design, relying on questionnaires without blinding patients or therapists and without a proper control group. LP aggressively targets patients' interpretation of their illness and the language they use to describe it so their response to symptom questionnaire after treatment will likely be biased. Rather than a reliable test of whether the intervention works (as would be the case in a proper blinded and placebo-controlled randomized trial) I worry that this planned Norwegian study will produce unreliable but positive-sounding results that will give the Lightning Process a scientific aura for future sales pitches. Unfortunately, in the Norwegian press, the national ME/CFS patient organisation that raised concerns about the study is being framed as a group of activists, trying to hamper scientific research.
  • Comment by Joan McParland on The ‘Lightning Process’: implausible, unproven, hyped and expensive Monday 01 June 2020: 10:06 Thank you for this article. After experiencing LP, I will be sharing widely as I still feel robbed of a large amount of money and foolish for letting the desperation to get well, overrule common sense! In my own opinion, it’s just another example of the abuse of the sick and vulnerable.
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