Diary Day 117: UK Government Work Health and Disability Green Paper Improving Lives

https://www.gov.uk/government/consultations/work-health-and-disability-improving-lives/work-health-and-disability-green-paper-improving-lives Over the last week I was aghast at the news yet again. The UK Government’s volte face regarding their approach to sick and disabled people in the benefit system is another assault in the arsenal of attacks meted on those too unwell or disabled to work. Remember when Theresa May took over as PM […]

Diary Day 116: Will Publishing The CFSME PACE Trial Data Topple The NHS?

I stand alongside many bloggers, clinicians, academics and interested parties who have been calling for the publication of the PACE trial data. I am delighted that the last few weeks has seen a legal ‘win’ for all those people and more. One question predominates: “Why all the fuss about releasing the data anyway? If it’s […]

Diary Day 109: 12th May ME Awareness Day, Milgram Experiment, PACE and The NHS

I missed writing something for 12th May, international ME awareness day this week but I read a lot of really good posts on people’s blogs that commemorate those lost and missing because of this disease.  I wondered what I wanted to write for ME Awareness Day. The thought: “write about what you know,” kept running […]

Diary Day 104: Talking About ME Symptoms, Gap in NHS Care, Grief, Cancer, Carer, What An ME Crash Feels Like Post 1

This weekend is an anniversary. It’s the anniversary of 2 years since I went into a steep decline in my functioning and symptoms that people with ME call a ‘crash.’   I went from being a moderate ME patient to a severe ME patient in the space of about a month.  In my case, the […]

Diary Day 102: The Care Plan For CFSME Patients, What, No Prognosis?

It’s never happened. What? I hear you ask. Oh, being told what I can expect from this illness, my illness, CFSME. What do you mean? I’ve never been told by anyone I’ve seen in the medical profession, including GPs, Clinical Psychologists, Occupational Therapists, Nurses or Physiotherapists – i.e. all the people I’ve seen for CFSME […]

Diary Day 93: Having A Nasty Winter Cold Makes Me Look Back On Journey With MECFS

It was inevitable: it’s winter, I am running central heating for the first time in 2 years and I’ve just been through a house move, which for someone without ME would be stressful, but for someone with CFSME is doubley so. Yup, I’ve got a nasty horrible cold. My nose has been blown constantly since […]

Tory Majority Day 85: What’s Also Wrong With The MECFS PACE Trial – The NHS Should Have Done The Critical Analysis So Tom Kindlon Didn’t Have To

I’ve said beforehand in this blog that I come from a varied professional background and that includes working in the UK NHS. That was before I got MECFS, that is. I’m not now fit to work in any capacity, so rapacious is this illness for which in the UK there is only one treatment option within […]

Tory Majority Day 79: CFSME and Applying For DLA and PIP – Seeking Advice

2 years ago I applied for Disability Living Allowance. I had help – my then disability rights and welfare support worker, the “First Julie”, was exemplary in taking me through the forms, guiding me to what evidence to collate, how to fill it out and what do to to appeal. She lost her job before […]

Tory Majority Day 77: What Works – My Rule Of Thumb For Getting MECFS Symptoms Reigned In

I’m suffering from an increase in MECFS symptoms at the moment but if you follow my diary you’ll have read how it feels pretty much every time I post. There’s never a day that goes past where the unwelcome guest isn’t in my life, so what do I do that makes it possible to manage the symptoms […]

Tory Majority Day 76: The Realisation Of The Limitations Of Having MECFS

It’s become obvious again: that this condition, this illness, this disability steals your life, your health and your choices. I’ve been having obvious spikes in symptoms over the last month. It’s not that I was well before the last month, honestly I wasn’t, but today I realised that before pressing the big red button to […]