Mithriel

[Adam @ABrokenBattery]

George Monbiot describes the treatment of #MECFS as “The Greatest Medical Scandal of the 21st century”. Repost of the introduction to my 27-minute explainer video for #MEAwarenessMonth — now optimised for phones.

[Adam @ABrokenBattery]

Post exertional malaise (PEM) is the hallmark symptom of #MECFS

It’s not fatigue following activity. It is a dramatic deterioration and worsening of symptoms.

Short video explainer - triggers, symptoms, and management.

Repost for the last day of #MEAwarenessMonth

[Mithriel @Mithriel4]

@elle_carnitine The very severe are just too ill for scientific studies. Our broken energy usage may best be discovered in the moderate. Then what we learn can be used to help them. Of course, we need more expertise in caring for the most severe.

[Mithriel @Mithriel4]

@biologyinmed They get socially transed then medicated at the start of puberty.

[Mithriel @Mithriel4]

@sunsopeningband @_Lucibee When I first read these results I was stunned. After years there was a test that was different in ME. Also easily available and well understood. Should have changed everything but this is ME.

[Mithriel @Mithriel4]

@serahaldin One of the unique characteristics of PEM is that you can feel fine then collapse 3 days later. Pacing is not a treatment just a way to try to cope. PEM is not your fault.

[Mithriel @Mithriel4]

@women_outspoken At one point, nurses I knew said that those at the top of the scale, longest serving, were being disciplined for trivial things to hound them out and hire cheaper replacements.

[Mithriel @Mithriel4]

@marinaflares I understand completely. I got ill at 14, struggled through a biology degree then collapsed. At 72 I don't know what I would have been when I grew up. Gets to me sometimes.

[Mithriel @Mithriel4]

@TinaRodwell1 @amolrajan Saying the patients experience their symptoms as real and debilitating despite them being psychosomatic is patronising and insulting. She has ignored all the objective evidence of biological damage.

[Mithriel @Mithriel4]

@JoannaWo4 You have a chronic illness that needs managed. We are all desperate to get well but it's more likely to happen if we take it slowly. In ME you need to "give up" you can't fight it. Hope you get an improvement.

[Mithriel @Mithriel4]

@JoannaWo4 The only thing that really helps ME is resting. I realised that chasing treatments used energy I didn't have. Workwell has good suggestions. Use the largest muscle to do things, split tasks into small bits with rests in-between and so on.

[Mithriel @Mithriel4]

@KH118118 @davidtuller1 @LongCovidAdvoc @Janebfc They always recommended physio which was graded!

[Mithriel @Mithriel4]

@BhupeshPrusty The CBT believers will be shown wrong by biological trials so they find problems. It has happened before.

[Mithriel @Mithriel4]

@DrGrahamLJ As someone who has had ME for decades I would settle for "I believe this patient has a disease even though I don't know the exact mechanism"

[Mithriel @Mithriel4]

@Boo1956 @soniasodha There are more than people like to think, but the bigger problem is that they abuse many children over decades. Especially so if they can worm their way into a profession with access to their preferred victims.

[Mithriel @Mithriel4]

@CF_Farrow The worst thing about autism is that they desperately want to do something but their body won't let them. It breaks my heart. I hope your son gets to the Science Museum.

[Mithriel @Mithriel4]

@ChrissieW670936 @DuncanHenry78 I was told that it would be obvious if any man was a child abuser. Maybe I opened the eyes of some people.

[Mithriel @Mithriel4]

@ChrissieW670936 @DuncanHenry78 local playgroups newsletter to say that if anyone felt that something was wrong they should tell someone, just in case.
The reaction shocked me. Some people were outraged and treated me as if I was encouraging abuse. 2/

[Mithriel @Mithriel4]

@ChrissieW670936 @DuncanHenry78 1983 when the extent of CSA was being discovered, it became obvious that in a lot of cases people had felt something was wrong but were wary about saying anything.
There was a case of a male nursery worker abusing kids so I put a piece in the 1/2

[Mithriel @Mithriel4]

@nickwallis Have a medical book published 1934. There is a big entry about soap eating by teenage girls. No one has even heard of this nowadays.