United Kingdom: ME Association news

Maybe try something like «always pronounce the individual letters of words that are written with only capital letters?»

 

I probably ought to let the MEA know but I have medical appointments tomorrow and probably Thursday. Will do it when I can.

 

I much prefer the text-to-speech software Emerge Australia use for their research digests to the one the MEA uses.

 

Do you have a name for it @Dolphin? To pass on.

 

aidocmaker.com
https://www.emerge.org.au/researchdigest/research-digest-issue-115/

The MEA software makes a mess of MEA itself. Also NHS.

 

https://meassociation.org.uk/2025/0...affecting multiple,kind of effort or activity.

New updated booklet: What you need to know about ME/CFS
May 15, 2025

The ME Association has published an updated and comprehensive booklet on everything you need to know about ME/CFS. Written by Dr Katrina Pears, Research Coordinator for The ME Association, it covers many important areas and provides expert information for people with ME/CFS.

Introduction
This booklet provides a summary of what you need to know about ME/CFS and is based on the evidence-based NICE Guideline, expert medical opinion, and the result of medical research.

It considers key symptoms, diagnosis, multidisciplinary care, what might cause the disease, predisposing, precipitating and perpetuating factors, and explains what the research has been telling us about the underlying disease process.

• ME/CFS is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated.
• It can cause many different symptoms, which can be triggered or worsened by any kind of effort or activity.
• It affects everyone differently and its impact varies widely – for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity.
• It is a fluctuating condition in which a person’s symptoms can change unpredictably in nature and severity over a day, week or longer.
• It can affect different aspects of the lives of both people with ME/CFS and their families and carers, including activities of daily living, family life, social life, emotional wellbeing, work and education.
• People with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by others (including family, friends, health and social care professionals, and teachers) who do not understand their illness.
• Because it can look like many other illnesses, people often face uncertainty and delays in diagnosis.
• Symptoms include flu-like malaise, sleep difficulties, brain fog and a debilitating fatigue that is unlike normal tiredness.
• People may also experience chronic pain, headaches, nausea, digestive problems, and sensitivity to light, sound and other stimuli.
• Symptoms often fluctuate in both nature and severity, causing distress and disrupting people’s lives.
• There are options that can help people manage their ME/CFS, but a therapy that helps one person may cause harm to another, so a carefully tailored plan and specialist advice is always needed.

pdf direct link

https://meassociation.org.uk/wp-content/uploads/2025/05/MECFS-What-you-need-to-know-April-2025.pdf

 

I wonder what therapies these are?

 

They endless said, in relation to the critiques of PACE, that 'one size doesn't fit all', implying that the therapies in PACE would help some people but not others. They just couldn't seem to get their heads around what a null effect really means. They seemed to think it made some worse, made no difference to others, and helped some, for an average null effect.

 

Things need to move on.
But maybe it will always be so.

 

There are a category of approx 20 people who apparently have been helped by GET or Brain Training or LP or that Chiropractor thing, they never STFU about it, you should have no trouble working out who they are or what treatment they are promoting.

 

New video on YouTube, which looks like a video version of the above PDF:

https://www.youtube.com/watch?v=mLpcUFmsyEU