I have raised the issue mentioned in this post with my local CFS (Yes, I hate the term CFS (Chronic Fatigue Syndrome) but that is the name of the local service provided) service and they agree that it is ‘confusing’ and needs to be edited. I have also spoken to Portsmouth MPs Penny Mordaunt (during …
If there are suspicions that a policy or procedure is not fit for purpose and/or causing additional problems or harm, during the review process would you not put a disclaimer on the current guidelines? For example – use with caution, proceed with care, use personal judgement when considering whether it is appropriate ‘treatment’. It’s a …
With ME Foggy Dog, I double-check new research findings with the charity/organisation I represent to make sure we are aligned and consistent. Because Foggy and I are currently fundraising for Cure ME, I contacted the Cure ME research team to get their opinion on the latest published prevalence estimate, before deciding whether to accept the …
Read moreShould The M.E Patient Community Adopt The New Prevalence Estimate of 65 Million?
WOW. After over 5 years of M.E advocacy, it was wonderful to have my efforts recognised by the wider world on Wednesday evening. I receive awesome support from the global M.E community on a daily basis but having my work highlighted and celebrated on Wednesday evening was very special to me. What is the Directory …
Myalgic Encephalomyelitis fluctuates, everything related to the condition ebbs and flows in terms of severity, duration, and priority. One thing remains constant though, the very annoying issue we have with sleep. You would think that an illness involving constant neuro-exhaustion would mean that I sleep a lot in order to ‘feel better’. Nope. More often …
The clock is ticking and 2020 is fast approaching. The arrival of a new year has caused me to ponder the past year. Alongside the fun and excitement there have been many negative aspects that, more often than not, I choose not to publicise as it would negatively impact the mood of Foggy’s Followers. Being …
Hello from Santa’s Grotto! (AKA our tinsel-bombed conservatory!). I am a big kid (I know, you never would have guessed…right?!) and love Christmas fun. Weirdly, so does Foggy! However, making things look tacky…sorry….sparkly and Christmassy, takes effort. For the other 11 and a half months, I struggle to find energy to get through a basic …
*Foggy* Helloooooo! It’s been a while! My P.A has been busy with her ‘other job, hmph! Last week, her ‘other job’ meant I had an adventure at Birmingham NEC and did some ‘work shadowing’ with Stripy Lightbulb CIC. I had a good look around the exhibition hall and saw some stuff that my awesome Foggy …
Read moreFoggy did some ‘work shadowing’ with Stripy Lightbulb CIC!
Hi, Today marks the 13th anniversary of the start of my life with Myalgic Encephalomyelitis. Unsurprisingly, I won’t be having a party to mark the occasion. To clarify, it is not the 13th anniversary of having a diagnosis of M.E (I was diagnosed as having C.F.S by a GP 2 and a half years later) …
It’s something I’ve said for years, my M.E often feels like I over-indulged the night before and I’m suffering for it. The issue I have with that is that M.E has brought about an intolerance to alcohol and has severely restricted my social life. I can’t remember the last time I had the opportunity to …
