The List

1. Other than on the socials of advocates and people living with M.E, have you seen ANYWHERE that 1.25 million+ people in the UK now meet the diagnostic criteria for Myalgic Encephalomyelitis? It has yet to be stated in MSM.

2. M.E is hardly ever mentioned in articles about Long Covid (est 1/50 articles and then mentioned as ‘similar’ or ‘overlaps’). It has STILL not been made public knowledge that half of long Covid cases meet M.E/CFS diagnostic criteria. Covid19 can lead to M.E or M.E-like chronic illness – again, no mention in MSM.

3.The UK Govt (and most/all Govts worldwide) have not acknowledged Covid causes M.E. (cases meet M.E criteria)

4. This lack of acknowledgement means we have no hope of increased research funding for M.E. M.E has always been GROSSLY underfunded by Govts.

5. Prior to Covid, M.E research received around 50p-£1.50 per patient per year in the UK. Comparable diseases such as M.S and Parkinson’s got around £40-£60 per patient per year. Why the difference?

6. 5% of people living with the disease have a very poor quality of life. Research shows it is as poor as in people with late stage cancer or late stage renal failure – this can go on for years/decades. There is no appropriate care/support for these very ill people.

7. Those on the ‘milder’ end of the spectrum have lost 50%+ of pre-M.E functionality. Yet this is rarely acknowledged by DWP, medics, and others who make ill-informed decisions about the person’s life.

8. Redefining Gravity will raise a MINIMUM of £1million for M.E biomedical research for Cure ME/MECFS Biobank and tackle the stigma by raising awareness of the disease on a large scale.

9. It’s obvious Govts and MSM will continue to stranglehold the funding M.E receives AND the narrative around prevalence/Covid/Long Covid. So we create our own narrative. We ‘redefine gravity’ –

10. We create something ourselves that is so big it CANNOT be ignored.

11. This is why I want A-list artists to perform. Their ‘reach’ is what our cause needs.

12. Redefining gravity is a CHALLENGE. I figure, if I’m going to do it….DO IT!! Dream big, reach for the stars and see what happens.

13. ‘Challenge’ = No budget. It can only be a success through VOLUNTARY and GOODWILL contributions of time, effort, skills, materials, and talent. Think ‘Challenge Anneka’. If Anneka Rice can do it….. why can’t I? (I’ll give it a good try at least!)

Get in touch if you can/want to help. I particularly need guidance from people with experience/expertise in the music industry and event management. But many hands make light work and all that, the more hands the better!

The JustGiving page for Redefining Gravity has been live since July 2023 and will be accepting donations until after the concert in July 2024, you can donate at any time. All donations go direct to Cure ME/M.E./C.F.S. biobank.  DONATE HERE – THANK YOU

Please follow the socials for this challenge, you can find it on X and Instagram using the handle @RDGravityME. Help to spread the word.

We have merch! (as you can see me wearing in the main photo above) Buy yours today via the website.

WEBSITE – WWW.REDEFININGGRAVITY.CO.UK

£1 million (MINIMUM) ….here we come!!

The post List of Reasons Why This Redefining Gravity Benefit Concert Is Needed first appeared on ME Foggy Dog.

45.

Where did those years go?! My head still thinks I am 29 in my pre-M.E healthy body judging by the ridiculous non-M.E friendly things it still wants to do!

My family have always been very open about all topics and the craziness and unusualness of the pandemic has caused us to have all kinds of compelling conversations during our time shielding me from the ‘bug’ (that didn’t work….March 23rd 2020 – great…but we’ve managed to make sure I haven’t caught it a second time!). It’s amazing what type of conversations crop up on a rainy Tuesday afternoon in the middle of a global pandemic. Topics that have been covered in our home include:

• What I need to do in the event of my parents’ death/s.
• What I want my funeral to be like.
• How my death would be announced to friends/family/Foggy Followers.
• Whether I/my parents want to go into care homes in the event of that being required.
• Wooden or cardboard coffin? Cremation or burial?

I’m sure it’s not just us who have been having these conversations. Covid19 has made human beings around the world think about their own mortality. Whilst some are behaving as if the pandemic is over, many of us are still living it. I live with my parents (both over 70 and so are ‘vulnerable’) and am a disabled person. Covid19 is still, despite all 3 of us being double jabbed, a clear and present threat. Whilst the risk has been reduced, there is still an associated risk. I have yet to meet anyone in person, or online, who can tell me how badly my Long Covid will react to reinfection after being double jabbed. I don’t want to put myself in the position of finding out either! At the peak of my acute infection I will never….NEVER… forget being so terrified that I wouldn’t wake up that I wrote down my last wishes and instructions for my parents to find. This was when the 111 service told me I wasn’t an emergency and that I should do ‘self-care’ at home. I was also quarantined and keeping my parents safe. I was on my own. I have never been so scared in my life. That will stay with me for the rest of my life, I’m certain of that.

The pandemic has made me realise that I am fortunate to live with my parents, there are many, many, other people who have had a much tougher time of it than me over the past 18 months. The pandemic has caused me to re-evaluate my life. I keep hearing on the news that other people are reassessing their work/life balance due to Covid19. In that regard, my life hasn’t changed. Due to my disability, I can still only work 20 hrs per week from my own home due to my very limited energy. My re-evaluation has been of whether there is anything I can or would change about where my life is right now.

My parents know that I have been frustrated at living with them for the past 15 years 4 months (ish). It was supposed to be a short term money-saving exercise while I was studying for my post-graduate degree in 2006-2007. As I have said many times before, I moved home in the Summer ready to start my Masters at the end of September 2006. I turned 30 in mid-October and thought the world was my oyster. Less than 4 weeks later, my life changed permanently. I caught a virus; I ‘got’ diagnosed with Chronic Fatigue Syndrome over 2 years later.

Prior to becoming a student I had always been very good with money, it was something I was proud of. I had planned for my future with savings and pension plans, I had lived independently in Plymouth for 7 years before moving back home in 2007. I am glad that I was able to do that because now, nearly 15 years later, it feels like it never happened. Like I have never had to be ‘independent’. As a 45 year old adult that makes me shudder inside and makes me feel like I have never been a ‘grown up’.  I have to actively remind myself that I paid my own bills, worked three jobs, went to university for 3 years, supported myself, and lived a full life away from my parents. 7 years out of my nearly 45 years on this planet, I have been able to live fully independently. Now, in 2021, I haven’t paid into a pension plan for 6 years and setting up a private pension plan is on my ‘to-do list’ when I have money to pay into one. All of that time spent planning my financial future in my twenties seems to have been a waste, it is not something that I can do anything about but it irks me nonetheless.

To be fair, my parents ‘allow’ me to live as independently as I can considering I have a very….very limited income. They could in no way be described as my carers but living under the same roof as them is a safety net for my very bad days. I won’t starve, they provide me with food, comfort, and warmth. For which I am, and will always be grateful.

My frustration is all down to me. I put pressure on myself by craving more independence and I still hold a smidge of optimism that one day a miracle will happen and I will be able to move out again. It has become a bit of an inside joke within my family, on a daily basis we talk as if nothing will ever change and that I will still be living here when decisions have to be made about care needs and/or funeral arrangements. On the odd occasion that I say ‘if I don’t live here I’ll do x, y, z’. That is usually met with snorts or giggles (from me). I do keep that positive optimism lurking in the fringes of my daydreams. As we all know, a period of remission could be waiting for me……an ability to work full time hours may be in my future….I might be able to pay rent! Woohoo! I have to hold on to that.

I think all M.E patients have periods of thinking about should, would, and could in terms of having M.E. If we had done anything differently would we not be in the life situation we are in now? The answer is that we will never know. Doesn’t stop us from wondering though does it?!

The problem I have now, today, is that my age has caught up with me very quickly. It seems just 5 minutes ago that I turned 40 and thought ‘this is my decade, it’s going to be fabulous!’. I was 43 at the start of the pandemic. In two weeks’ time I will be 45.  I keep reading about young adults and 20-somethings saying they are losing years of their life due to the pandemic. Aren’t we all? I think at age 44, ordinarily you kind of have to pull your finger out to do stuff that wouldn’t be ‘age appropriate’ any later in life. Time really is running out. I don’t have 20 years to live before I hit 45, I have 2 weeks….and M.E.

Overall, I am happy with how I lived my life up to turning 29, yes I had bad relationships and made mistakes but I was living life. Live and learn is how I live my life. You have to experience something to know if it was the right thing to do and if it wasn’t, make sure you don’t repeat the mistake! I loved my pre-M.E life and there is definitely an element of grieving my former life happening right now. But, that could be due to the pandemic causing me/us to reassess our lives as I said earlier. It could also be because I am now going through the exact same diagnostic and stigmatising process as I did 14-15 years ago now that I also have Post Acute Sequelae of Covid19 (Long Covid). I am dealing with negativity and learning to live with and self-manage  new chronic symptoms in real time and also having to deal with traumatic memories from the same process I went through with M.E a third of a lifetime ago. I’ve said I believe in ‘live and learn’….if I can do that, why can’t medics? They are making the exact same mistakes or poor decisions as nearly 15 years go, why have they not learned? Lives are dependent on them learning about viral-onset illness. At least my mistakes only impact my own life!

Love Sally

and Foggy (OBVIOUSLY)

xxxxx

The post How Did I End Up Here? first appeared on ME Foggy Dog.