Invisible / Chronic Illness

Paul Garner On long Haul Covid-19—Don’t Try To Dominate This Virus, Accommodate It

british-medical-journal

  From BMJ Opinion.   “Has covid-19 gone?” My first thought every morning for six months. A few weeks ago, I was jubilant. The muscle aches had evaporated, my head was clear. I announced this to Rachael, a friend who knows chronic fatigue well. “Fantastic, Paul. You have found your baseline.” Crestfallen, I realised this […]

Long Covid: Overlap Emerges With ME – Including Debate Over Treatment

COVID-19-Pandemic-min

  By Linda Geddes in The Guardian. Six weeks after contracting Covid-19 in April, Dr Amy Small felt well enough to attempt a walk around Holyrood park in Edinburgh with her young family. Her kids wanted to climb Arthur’s Seat – the craggy hill at its centre. Thinking it would be OK if she walked slowly, […]

Why Is ME/CFS Getting So Little Research Funding?

Funding

  By ME/CFS Skeptic.   In a previous blog, Evelien and I argued that ME/CFS is getting less research funding than illnesses with a comparable prevalence and disability. In this article, we will try to get a better understanding of why ME/CFS gets so little research funding. Many causes have been proposed such as stigma, lack […]

Activity And Energy Management – Pacing

Pacing

  From the ME/CFS Clinician Coalition USA.   “Striking the right balance between activity and rest is one of the most difficult aspects of coming to terms with M.E. On one hand is the need to take an appropriate amount of rest and relaxation, especially during the very early stages, as well as during periods of […]

No More Mr NICE Guy…

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    By Brian Hughes in The Science Bit.   The newly released draft NICE guidelines for the management of “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” continue to cause a stir. And rightly so. The new guidelines not only repudiate a heretofore favoured treatment approach for a particular illness, they also threaten to discredit an entire (albeit quirky) branch of medicine — […]

First In Our Superhero Series : The Whitney

Whitnet Dafoe

    Written by Di in Stanford Wood Studio.   Di has had a fascination with beautiful handmade items all her life and always had a yen to try making some herself, yet forever found herself putting it off. She got to the stage where she thought, if not now; when? And that’s how she […]

Controversial Study On ME-Patients Receives Ethical Approval

Lightning

By MElivit.   On November 10th 2020, English health authorities published a draft of a new set of guidelines for ME/CFS. It is confirmed that ME is a physiological disease, and it is advised against therapy and exercise as treatment. It is especially warned against the Lightning Process (LP). Read more here: English health authorities reject […]

“Ice Cream & Hypothermia” Revisited + A Chilling NICE Consultation Process

Valerie Eliot-Smith

By Valerie Eliot Smith in Law and Health: due process and civil society.   Note: this post runs at 2270 words. It falls naturally into two sections of approximately the same length.  ************** The blog has been rather quiet for a while. While my day-to-day work does not stop, my ability to write blog posts is […]

Long-Covid And Exercise

Doctor

  Despite NICE potentially dropping Graded Exercise Therapy as a treatment for ME, it’s still being suggested by GP’s to those with Long-Covid that they should exercise more as a way out of it. If your GP recommends exercise, please ignore, as it is very likely to make you worse.

Why Do We Need To highlight Disability History Month ?

disability-rights

  By Gem Turner in WheelAir.   At the time of posting this, it’s Disability History Month in the UK. It’s not very widely known – and when I talk about it, it gets a lot of questions from people. The main one is something like “it’s quite good for disabled people now though isn’t […]

Proposed British Guidelines Reject Useless Chronic Fatigue Syndrome Treatments

myths

  By DAVID TULLER and STEVEN LUBET in Statnews.com.    irrational fears they had an organic illness. The favored treatments were graded exercise therapy, designed to counter the deconditioning with a program of progressively increasing activity, a form of cognitive behavior therapy specifically designed to address the unfounded illness beliefs, or a combination of the two. In the […]

News In Brief – November 2020

News

  From Science For ME.   This thread has a Science for ME ‘News in Brief’ post for each week in November 2020 written by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week’s news. Week beginning 2nd November 2020 News, articles, videos UK NICE ME/CFS guideline The draft guideline is due to be published on […]

Trial By Error: Jennie Spotila’s Annual Review Of NIH Funding

Funding

  By David Tuller, DrPH Every year, Jennie Spotila posts her analysis of annual funding for ME from the US National Institutes of Health on her invaluable blog, Occupy M.E. (On the other hand, Occupy Me is a 16-minute gay drama from 2015 about an interlude between two guys. I have no idea if it’s any good, but looks […]

Montreal Researchers Make Chronic Fatigue Syndrome Discovery

Blood Test

  By Jean-Benoit Legault  The Canadian Press. A discovery by Montreal researchers is expected to improve the diagnosis and treatment of patients with myalgic encephalomyelitis (ME), better known as chronic fatigue syndrome. In most instances, ME is currently diagnosed by elimination, as doctors put aside other possible causes of the patient’s symptoms. But researchers from the University […]

Getting A Tooth Out With M.E. !

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By Bill Clayton. Just a little update on the tooth extraction. I’ve just been talking about this as ME means that I needed a general aesthetic due to not being able to deal with the lights, vibrations, and the whole construction team that would have to climb into my mouth at the same time ! […]

Important News From Jennifer Brea

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  From #MEAction.   Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time to focus on her health after five intense years of ME and advocacy. This will not happen immediately- we will be working hard to find a […]

Could This Actually Be Happening ?

mecfs-tagcloud

      By Brian Hughes In The Science Bit.   Mark this day in your calendar. We could be observing the beginning of the end of a decades-long medical scandal. In the UK, the National Institute for Health and Care Excellence (NICE) have published new draft guidelines for the management of “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome”. […]

NICE Draft Guidelines On ME Published

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  After a very long wait, too long, NICE have publised their draft guidlines on the treatment of ME. It seems that at long last, and after huge pressre by the ME Community, Graded Exercise Therapy has been removed as a recommended treatment for ME.  It shouldn’t have taken this long, and too many individuals […]

Doctors Examining Possible Link Between Chronic Fatigue Syndrome And COVID-19

COVID-19-Pandemic-min

  By Dr. Danielle Weitzer and Dr. Christie Richardson in ABC News.   By this point, many people can identify symptoms of COVID-19 — fever, fatigue, shortness of breath — but fewer know that those can occur after a successful recovery and closely resemble another illness: chronic fatigue syndrome. “There may well be a post-viral syndrome associated with COVID-19,” Dr. Anthony […]

Multiple Sclerosis: Some Patients May Already Hold The Key To Protecting The Brain Against Viruses

NK Cells

  By Lorna Hayden and Marieke Pingen in The Conversation. Usually our immune system protects us from harmful microbes such as bacteria or viruses. It does this either by directly attacking a microbe, or producing an antibody which recognises and removes microbes from the body. But, in patients with multiple sclerosis (MS), their immune response is overactive, […]

Susanna Clarke: ‘I Was Cut Off From The World, Bound In One Place By Illness’

Books

  By Justine Jordan in The Guardian.   Sixteen years ago, Susanna Clarke’s debut novel became a publishing phenomenon. Jonathan Strange & Mr Norrell is an unlikely story of intellectual obsession, set in a Regency England in which the buried powers of English magic are reawoken by two scholar magicians. The prose style mashes together Jane Austen […]

When Spaces Are Made Accessible For Disabled People, Everyone Benefits

Samantha Renke

  By Samantha Renke in the Metro.   I have a confession: I seem to have fallen out of love with London, something I never thought would (or even could) happen. Having moved to the Big Smoke almost nine years ago to follow my dreams and live independently, I imagined spending the rest of my adult […]

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