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 113: Diabetes and MECFS – The Results, GP Advice, The Barriers To Change

Yesterday I Googled “MECFS and Type 2 Diabetes.” There were various links on the 1st page of search results. The link is in that sentence. Included in the list was this blog’s category “MECFS and Type 2 Diabetes.” You can find all my posts on this subject by clicking on that link to the right of […]

Diary Day 107: Research Needed, MECFS Is A Spectrum Disorder, Energy Finite Though?

Yesterday I blogged about meeting a new friend for a cuppa.  While we were talking she talked about the in’s and out’s of having a child who is Autistic. Then we talked about the in’s and out’s of having CFSME. It’s the first time I’ve had to explain my experience of CFSME with someone who […]

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 103: Keep Writing, Do I Know Someone With Undiagnosed ME, Language Is Our Barrier, Canary In The Coalmine.

It’s been a while, again, since I’ve written. It seems these days that every day that goes past there’s some new news that affects me, you, our community. Originally this week I wanted to sit down and write about how difficult I find it explaining to anyone what ME is actually like. I mean, words, […]

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 101: An Example Of How MECFS Really is. Yes Really.

On Sunday afternoon, my family were visiting. It was the first time they’d seen me since Xmas, which, for a group of relatives who all live in London, and all regularly visit my silver surfer Dad, is an example of how much planning it takes for me to host a social event at my place. Honestly, […]

Diary Day 100: Reading Postive Press About The MECFS PACE Trial Upsets Me Again

I’ve been focussing my attention on other things recently – well, focussing what attention I have towards other things recently – I should say. Occasionally though, something has popped up in my timeline through stories that are circulating in the news, or via the ME charities and they pull my attention back towards CFSME and […]

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 […]

Diary Day 91: In My New Home, Housing Benefit, Patient Group Direction Flu Jab, Telling Pharmacist What MECFS Is

….and hello December!  It’s more like the end of February down here at the moment, the sun is shining in the way it does when the season is changing from winter to Spring and you feel that warmth is coming. Maybe it’s also my good mood warming me up because I’m firmly ensconced in my […]