I’m in my Global Travel Bag somewhere between Brisbane, Australia and Portsmouth, UK. I’m hoping to be back in time for the Tea-Themed Beach Party tomorrow afternoon – I’m the guest of honour!! My P.A. has a few thoughts on tomorrow, my globetrotting and our awesomeness! I’ll let her tell you what those thoughts are!

Hi,

Well, this is all a bit bittersweet. In the past year, I have become very aware that our newer Foggy Followers know very little about how ME Foggy Dog came about, what/who Foggy is (*Foggy* PARDON?!!) or about the work we did prior to the pandemic. It has to be acknowledged that our work massively changed as a direct result of the pandemic. For the first few years post-2020 international travel was simply not possible so I concentrated on political advocacy instead of fundraising.  Juggling my own newly-acquired Long COVID (Fibro and MCAS) with my M.E and managing two social enterprises meant that I wasn’t in the right headspace for fun and adventure either.

I made light of it in the moment but was slightly ‘hurt’ when people I have been closely working with or chatting to this year said they didn’t ‘get’ what I do with Foggy. But then I realised they only ‘found’ ME Foggy Dog after 2020. I took it personally, only in that ME Foggy Dog is me, Foggy is me, so when people don’t ‘get it’ I know it’s because of something I have/haven’t done. So to established Followers from pre-pandemic days, I’m so sorry. I obviously haven’t been doing the ‘fun’ very well over the past 4 years, everything went a bit Pete Tong  in 2020.

It also feels as if the world has moved on, possibly temporarily, from cute and fluffy fundraising. The world seems a lot more hardened than pre-2020.

I have taken the decision to stop Foggy’s global adventuring. But be assured Foggy isn’t ‘going anywhere’…he’ll still be campaigning but in a different format (and possibly not fundraising again). It now costs more money and takes twice as long for him to reach destinations so it’s not ‘cost effective’ either.

Something I don’t think many ‘get’ is that running the Foggy Global Challenge has been a year-long logistical challenge, it’s not easy and requires a lot of energy. I think the lack of understanding that this is my version of a marathon is reflected in the donation total which, as I sit and type this, stands at £1125 plus Gift aid. This is the lowest amount ME Foggy Dog has ever raised during a year-long challenge.

I had so many plans to mark our 10 year anniversary of M.E. campaigning but for one reason or another they just haven’t happened.  So tomorrow, my family, Foggy and I will be heading to the beach where Foggy’s globetrotting first began back in 2014. It’ll finish where it started, with a few photos being taken on a pebbly beach in the afternoon before the tide comes in. I hope local M.E.eps/their families will pop along to have a chat and join in the photo fun! (we have inflatables!). See the Portsmouth/Southsea event here.

I have a decade of fond memories of Foggy’s exploits, I remember every single Foggy-sitter, destination, cockpit visit, and celeb cuddle (Foggy not me! Lucky moo). I also remember every single person with M.E. who has engaged and loved Foggy’s travel exploits as much as I do. Jeanne-Marie in France and Nigel in the UK- I see you xx

Without going all ‘Oscars’, thank you to every single person who has Followed ME Foggy Dog since 2014, we have achieved a lot with barely any funds and that is an achievement in itself! Your support has kept me going and continues to spur me on to new pastures with Foggy.

BED for severe M.E. is coming and I will write about that another day, this blog is all about Foggy (as it should be as his campaign draws to a close).

Thank you for your support.

Love Sally

(and Foggy, obviously)

xxxxx

If you want to donate and help us to end on a high tomorrow, you can donate here Thank you.

The post End Of An Era – Foggy’s Last Day of Globetrotting Adventuring is Tomorrow! first appeared on ME Foggy Dog.

When Foggy met Jennie

I first ‘met’ Jennie Jacques a few months ago when she interviewed me to launch her YouTube channel and to talk about my NHS protocol campaign and M.E advocacy. Please follow Jennie’s YouTube channel.

The Pawfect Bake Off

This AWESOME campaign launched this week – thank you to Jennie Jacques’ Bake 4 MECFS for holding this ‘Bake Off’ to fundraise for us. As it states on the website-

The Pawfect Off is to celebrate Sally Callow’s 10 year anniversary with the famous

ME Foggy Dog – a rather handsome globetrotting adventurer raising funds for CURE M.E!’

I LOVE this idea!! It is the perfect theme for ME Foggy Dog, as you all know Foggy was a soft toy replica of my own in real life dog Patch in 2014 and Maggie is my current fur baby. I LOVE dogs! (real life and in my imagination!)

See photos of the furries in my life, I can hear the ‘ahhhhhhhhh’s already!

Back to the Bake Off, please do take part if you are able to. It’ll be great fun, raise oodles of cash for Cure ME, and I’m on the judging panel! (Glad Foggy isn’t a judge – I’m sure he could be bribed with Wotsits!). Everything you need to know can be found on the Bake4MECFS website.

Watch this fun Bake 4 MECFS Instagram video – https://www.instagram.com/reel/C833e6Zs3xq/

Not long to go now and it’s the perfect way to end on a high note!

Love Sally

and Foggy (OBVIOUSLY)

xx

ps. Don’t forget to donate to Foggy’s fund for Cure ME – we need research funding. £1102 has been raised since July 2023. Thank you to all who have donated and supported this fundraiser already.

Donate here

The post The Pawfect Bake Off! first appeared on ME Foggy Dog.

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.

You know THOSE people?

THOSE people who say YOLO? (You Only Live Once)

THOSE people who throw caution to the wind and take risks due to the widespread belief that the medical profession can fix everything and get bodies ‘back to normal’ if anything ‘goes wrong’?

What happens when the problem is common but not fixable?

Caught a virus? Take paracetamol and stay hydrated. You’ll be better in a fortnight.

Having surgery? You’ll most likely be better and fully functioning within a few months after participating in physiotherapy.

Getting vaccinated? You might have minor side-effects for 24 hrs but then you’ll be fine.

These 3 things are some of the triggers for Myalgic Encephalomyelitis.

Viruses, surgery, vaccines.

People living with M.E/C.F.S become unwell and start looking to be fixed.

This is when patients face –

– nothing showing up in tests
– disbelief from medics,
– being told there are no treatments or cure
– being told that 5% get better and most will be ill for the rest of their life OR not being told this at all and having their illness downplayed.
– snake oil salesmen promising the world, costing the earth, but M.E-related quality of life and ill health will not improve.
– loss of relationships and friendships due to poor understanding of the disease and stigma.
– loss of employment as employers struggle to understand/support people with Myalgic Encephalomyelitis.
– being denied disability benefits because of the rife deliberate misinformation on the disease.

Individuals living with the disease are worth £1.50 per year to the UK Government. That’s how much funding we were given per patient per year in 2019 (around £450,000). I am currently waiting for responses to Freedom of Information requests asking for information on how much funding M.E was given in years 20/21, 21/22, and 22/23 as this information is not available/impossible to find online.

With that negligible level of funding, M.E will never get a biomarker/diagnostic test, treatment, or cure.

There are now 1.25 million people living with this disease in the UK, an updated global prevalence statistic is near impossible to estimate at the moment due to multiple factors including variable Covid19 rates, and lack of data. However, I believe it is likely that the pre-COVID19 global prevalence of 17-30 million has at least tripled since 2020.

All of the above is why I have reached my limit of putting up with the status quo. If Governments will not take M.E seriously and continually reinforce the brick wall that I have been banging my head against for years, then I will take another route. I will go around the wall.

That’s why I set the Redefining Gravity challenge. Let’s change the narrative –

Redefining Gravity

See redefininggravity.co.uk for all info.

Get in touch if you have the skills, talent, expertise, knowledge, or connections to help with this challenge. Thank you.

Sally

ps. Foggy’s Global Challenge is running at the same time as Redefining Gravity, both campaigns aim to raise as much money as possible in one year. Both JustGiving links and Foggy’s *NEW* Google Maps map can be found on mefoggydog.org

The post Myalgic Encephalomyelitis, YOLO, and Being ‘Unfixable’. first appeared on ME Foggy Dog.

By now, you should all know that ME Foggy Dog has launched a concert challenge project called ‘Redefining Gravity’, it launched on Monday 17th July 2023 during this event to mark the launch of Foggy’s Global Challenge – yes –  Foggy is back to global adventuring!! He’s currently on his way to Munich – it’s his first time outside of the UK since March 2020!

Please note: Both Foggy’s Global Challenge AND ‘Redefining Gravity‘ are fundraising challenges and both have year-long JustGiving pages. Both are raising funds for biomedical research for Cure ME / MEcfs biobank. Please donate if you are able to.

The challenge –

To hold a fundraising concert for at least 1500 people somewhere in the UK in the week of

17th July 2024 to mark ME Foggy Dog’s 10th anniversary of M.E campaigning and fundraising.

The ‘challenge’ is to do this relying solely on the goodwill and voluntary contributions of materials, skills, time, and effort of individuals and businesses. 

Please take a look at www.redefininggravity.co.uk to see what the campaign is all about! There are also Twitter (X?) and Instagram accounts if you want to keep up to date with the latest info – sign up via the website.

I am using the universal language of music to reach as many people as possible with this fundraiser.

I’ve just written to Coldplay’s PR team and asked them to pass this email on to Chris Martin / Coldplay.

But just in case that doesn’t happen, I’m posting it here as an ‘open letter’.

Hi,

I know you contributed to a fundraising concert in 2022 for Hal Walker and I am now cheekily, but sincerely, asking for your help to improve the lives of millions of M.E/C.F.S patients in the UK and internationally.

I’m a social entrepreneur who works for the benefit of the global Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patient community. I am currently working on a challenge to host a fundraising concert (July 2024 – UK) to raise as much money as possible for M.E/C.F.S biomedical research. My social enterprises are ME Foggy Dog (mefoggydog.org) and Stripy Lightbulb CIC (stripylightbulb.com), I have had M.E/C.F.S myself since 2006.

Redefining Gravity video

Launch event – Redefining Gravity launched in last 20 minutes of event. https://youtu.be/x0jCEWau5t0

Why?

There are now an estimated 1.25 million people living with M.E/C.F.S and post-covid M.E/C.F.S in the UK – it is impossible to estimate global prevalence but it is likely that the pre-covid19 prevalence of 17-30 million has tripled over the past 3 years and it will continue to rise.

M.E/C.F.S is now one of the biggest health crises the world faces in 2023.

There is no biomarker for M.E/C.F.S (no tests to diagnose it)

Zero treatments

Zero cures

The quality of life for severe/very severe M.E/C.F.S patients (25% of all cases) is worse than that of those with late stage HIV AIDS and some cancers at end of life. M.E/C.F.S is a very serious, severely debilitating, multi-system affecting, disease.

Governments have yet to increase research funding into the life-altering disease and so we are having to raise our own funds if we are ever to have any hope of getting better. Pre-covid, in the UK, M.E/C.F.S was given no more than £1.50 per patient per year by the UK Government when comparable diseases (M.S /Parkinsons) were given £40 per patient per year. This is inequitable funding. This situation is replicated internationally.

If we were given equitable funding by the UK Government we would have an annual research funding allocation of £50 million. As yet, we have not received more than £420,000 in one year (no data available 2021-23).

We, the M.E/C.F.S patient community, cannot get better without research funding.

The challenge is to host a concert for AT LEAST 1500 people somewhere in the UK in the week of 16th July 2024 by relying solely on the goodwill and voluntary contributions of individuals and businesses.

Could you be our Bob Geldof? (Live Aid) Could you help to bring about this desperately needed concert and help to raise research funding for this neglected and heavily stigmatised patient group?

Please check out www.redefininggravity.co.uk for more info.

I’ve also linked ‘A Politician’s Guide’ – https://www.stripylightbulb.com/mpdoyourjob4me/ this will give you an idea of how bad M.E/C.F.S can be. This level of severity – severe/very severe- now impacts around 300,000 people in the UK.

I look forward to hearing from you,

Best wishes,

Sally Callow

It’s going to be an AWESOME whirlwind of a year isn’t it?!!

Love Sally

and Foggy (OBVIOUSLY)

The post ‘Redefining Gravity’ Fundraising Concert – Open Letter to Chris Martin / Coldplay first appeared on ME Foggy Dog.

Foggy’s Followers on his social media platforms will have seen that I closed Foggy’s World Tour 2019/2020 yesterday due to issues brought about the COVID-19. Watch this video.

eeks ago when travel bans and cancelled holidays/business trips started to cause problems with Foggy’s globetrotting. But, as the pandemic worsened I felt it would no longer be safe for Foggy’s sitters to get out and about with Foggy and it may be the case in a few weeks that post offices are closed.

I am very disappointed and it wasn’t a decision I took lightly.

Anyone who has followed Foggy’s exploits since 2014 will know how determined I am to raise as much research funding as possible and to raise awareness at every opportunity. In the past few months, I have had a number of informal meetings with people who were all keen to help. Things like concerts, lectures, awareness events and designing new merchandise. All of which are awesome and will help Foggy’s work.

But now the pause button has been pressed.

I am desperately hoping that these talks and plans can be picked up again once COVID-19 is dealt with and life can resume as ‘normal’ (Will we ever get back to that?).

As some of you will have seen, Foggy is now in Russia. Foggy was Foggy-napped by Kate from Cure ME. I knew nothing of his extra trip until I received an email from Jack from Cure ME last night. I got this photo – I was relieved to see no ransom note! (Joking Kate, thank you). Since 2014, the one place I have dreamed of being ‘Foggy’d’ was Russia. This trip has made my own personal dream come true. Foggy will get back to Foggy HQ next week sometime, paws crossed.

I am keeping the Just Giving page open until May 8th (the date the World Tour was due to end). I will be continuing my advocacy work so if I inspire a donation or two that would be great.

COVID-19 hasn’t diminished our need for biomedical research.

Donate here

You can still buy Foggy’s merchandise via mefoggydog.org. 50% of our surplus will fund M.E research.

There is a short video in the pipeline. Thank you to Kay, Gillian and Kirsty for talking about their M.E experience on camera. My student volunteer Mason is now editing the footage and it should be available in a few weeks’ time.

As I have reassured Cure ME, Foggy will be back. I have no idea when but he will continue to fundraise for Cure ME. Team Foggy think they are awesome and have our continued support. We are very disappointed that we didn’t manage to raise more money over the past 10 months but there have been a number of other charitable schemes that have also required funding so it’s not a surprise. Our M.E community’s pot of money isn’t inexhaustible.

Remember, Cure ME’s research reach is global. They enable research around the world and do fantastic work themselves.

Thank you for your love and support, Foggy snogs to every Foggy Follower wherever you live around the world.

Love Sally

and Foggy OBVIOUSLY xxxx

The post All Good Things Come To An End first appeared on ME Foggy Dog.

15 days to launch!

As long-term Foggy Followers will know, I like to have defined year-long campaigns with a start and an end point. This is so that donors don’t get donation fatigue but also so that we can set targets for Foggy.

Previous campaigns have made me realise something about myself, I don’t like missing targets. I take it personally, even though I know it is out of my control. The monetary target always hits me particularly hard as I know there is a desperate need for research funding. I also recognise that at least 75% of Foggy’s donations come from the M.E./C.F.S. community itself, and that pot of cash isn’t limitless. The 2019-20 World Tour does not have a monetary target. THE SKY’S THE LIMIT! Foggy and I will just see how much we can raise with a one year period- by any means necessary.

There will, as always, be a Just Giving page. It has already been set up but I haven’t promoted it yet as I don’t want to confuse everybody! It will be made active on May 8th. I will be promoting a Just Text Giving code during my awareness event so hopefully, we will make a bit of cash on the first evening of the globetrotting year.

In addition to that, I have ‘met’ Michael via LinkedIn. He has offered to do a physical challenge for Foggy. I will be promoting his Just Giving page to Foggy’s Followers and beyond after May 8th. Again, I don’t want to create confusion by asking for donations before Foggy’s year of adventuring starts. This physical challenge will be done as a member of ‘Team Foggy’ and the funds raised will be added to Foggy’s total.

If you would like to do your own physical challenge and be a member of ‘Team Foggy’ please do let me know. All money raised is going to Cure ME for biomedical research. If you have M.E./C.F.S, can’t do a physical challenge, but would like to do some fundraising for Foggy in your own way, get in touch! Maybe a coffee morning, raffle, concert….whatever! Absolutely anything (legal!) goes. As I have said THE SKY’S THE LIMIT in terms of fundraising this year.

As I have been saying since September, ME Foggy Dog is now a social enterprise, which means we are a not-for-profit business. This is why there is a charge for FogPod-Foggy’s podcast (sign up via mefoggydog.org), 50% of our surplus (profit) will be going to Cure ME at the end of the tax year. Any surplus from merchandise sales and Go Raise will also be heading to Cure ME. After doing everything for free since 2014, I am now taking a fresh approach to raising funds. It is now a mixture of donations (Just Giving) and surplus from the business.

We have a new range of merchandise! You’ll be able to see it on mefoggydog.org later today. If you buy YOURS now, you’ll have it in time for ME Awareness week!

If you live in or around Portsmouth (UK) please do come to our M.E Awareness event. It’ll be an informative but engaging evening. We have Cure ME (delivering a brief talk) and Retha Viviers (MECFS South Africa – Skype) as special guests! It’s also Foggy’s launch event so expect fun! I’m hoping to screen the event on Facebook Live but, as my efforts with technology failed last year, that’s not 100% guaranteed! Here’s the link – https://www.eventbrite.co.uk/e/me-awareness-event-tickets-59691927161

I hope that you enjoyed a relaxing Easter.

Love and Foggy snogs xxx

The post Foggy’s World Tour 2019-20….Coming Soon! first appeared on ME Foggy Dog.

I’d like to share the love about Team Foggy’s friend Retha Viviers. Over the past year or so, Retha has become a close confidant and someone to bounce ideas off. She is also the reason I became aware of the dictaphone option on WhatsApp. We use that function to communicate as typing is usually far too tiring!

I want to help to raise awareness of her story, why she set up the ME CFS Foundation in South Africa, and how we can help her in her efforts. This is the first of a number of blog posts about M.E in South Africa, as told by Retha Viviers.

This is Retha’s M.E story.

My name is Retha Viviers. I was born in Johannesburg in South Africa. I am happily married and have 2 lovely daughters; aged 26 and 18 years old.

I studied quite a bit at University and enjoyed working. I started in Marketing Research, moved onto Business Analysis and later became co-director of our own business providing different services in the petroleum and later on the security industries.

I always had a lot of energy: I used to love: dancing, camping, hiking, socialising, doing things on the spur of the moment, playing and swimming with my children, reading, etc. I was outgoing and loved talking to people. We lived at the coast when I underwent a fairly big stomach operation in 2002.

My life was about to change …

The expected recovery time for my operation was 6 weeks; however, months after the operation I still couldn’t build any stamina, I knew something was wrong. I started getting viruses all the time and struggled waking up in the morning.

My health deteriorated and during 2004 I was eventually diagnosed with Myalgic Encephalomyelitis (also referred to as Chronic Fatigue Syndrome) – hereafter ME/CFS. I was fairly fortunate in that I could still continue working up to 2008.

However, at that time I could no longer drag myself through the day. Long before then, the activities I so much loved became a MEMORY, no more dancing, hiking, playing and swimming with my children, etc.

I had to face the fact that life as I knew it was completely over. I finally had to accept that my body was broken.

Having ME/CFS is a difficult life, but when my oldest daughter contracted a virus which attacked her heart and ME/CFS symptoms started our family was literally devastated. She had to leave school and continue with her last year of school via homeschool. Her dream of becoming a doctor was shattered; this was 9 years ago. She started reading medical books by the age of 12 and that was the only field which interested her, it was her passion.

Watching her missing out on life a young person should be living breaks my heart!

Personally, ME/CFS came at a big cost to my family and I but I have also gained in unexpected ways. From a cost point of view, I’ve lost the ability to earn an income, which ruined us financially as I was supposed to become the main breadwinner, my husband is 15 years older than me and he was going to be the househusband, take care of the children by scaling down his involvement in our business. Due to my illness and two projects which went south we lost our house and all our life savings. My husband worked as an engineer but was close to 60 then and couldn’t find a position as South Africa gives preference to previously disadvantaged applicants due to the terrible “Apartheid” system. My oldest daughter’s ME also added to our already dire financial situation. Touch wood my youngest daughter is healthy and is completing high school in November this year.

I’ve lost my identity to a large extent, and my memory and other cognitive abilities have deteriorated significantly. Physically I have become weak. Getting ME/CFS is like a jail sentence. The time you spend in your cell and how big your cell is depends on how severely ill you are. A cell can be your bed, a room, or your house. Leaving your cell comes at a high price and you risk the chance of a relapse. It is called post-exertional malaise (PEM).

ME/CFS is also an isolating illness. Telephone calls can be exhausting, so socialising is very difficult if not impossible. Going over your energy limit (some call it the number of spoons you have available to use per day) leaves you feeling very ill for a few days, if not longer, after an event. There is no room for doing things on the spur of the moment, etc. People need to understand ME/CFS is a disability; it is just the level thereof that varies. In terms of an ME/CFS disability scale, I am around 50 – 60% disabled.

From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched my life. There was a small ME Association in South Africa headed by the late Arlene Vermaak. She collected articles from across the world and issued a hard copy magazine quarterly. Arlene did a lot of work for ME awareness in South Africa but unfortunately died of cancer in 2015. As Facebook became a way to form online groups I started a support group on Facebook in November of 2012. It is also very difficult for ME/CFS patients to attend physical events.

Over the next few years, I became aware of the dire needs of patients for hope, companionship, financial assistance, medical treatment, special care facilities, and basic living necessities. This was pretty much the situation I was in as well. I have come across the most amazing people, very ill and in severe pain, but still very kind and as positive as can be.

The ME CFS Foundation South Africa NPO I realised something formal (and it had to be quick) had to be done for ME/CFS in South Africa and founded The ME CFS Foundation South Africa NPO together with my daughter (also suffering from ME/CFS). We are currently in the process to appoint our fifth director.

I found a new purpose in life, one of helping others in the same or worse situation we’re in. I function from home, sometimes on bad days from bed. I try to stick to my resting schedule, but there are still days where I am too ill to do anything. Knowing the suffering of fellow patients keeps me going and it has become my passion to make a positive difference in the lives of others with ME/CFS.

I have formed strong bonds with many fellow patients; some being extremely ill, many living in dire circumstances in need of urgent assistance. I will not rest until we have helped them. Each person reached makes all the hard work and sacrifice more than worth it.

We have patients in need of basic medical treatment, basic living necessities, accommodation, etc. At the moment there are no government disability benefits for ME/CFS patients in South Africa, to the best of my knowledge only one person has been successful applying for these and the amount is a mere R1 700 per month (₤90).

We have come a long way the (almost) past 3 years and have really progressed with raising awareness, educating the public and healthcare practitioners, helping patients getting diagnosed, assisting with basic necessities, counselling patients, providing support and hope through our online support group, was on several TV and radio programs and in a few newspapers/magazines, established relationships with awesome people (Sally and ME Foggy (with Kat) included), participated in small research projects, participated in #MillionsMissing , screened UNREST, etc. We are in the process of helping a ME/CFS and FM patient to be medically boarded by her insurer, this is a critical watershed matter and we HAVE to help her succeed.

However, we need help….

Fundraising is challenging in South Africa due to the ECONOMIC and POLITIICAL uncertainties and the current requirements by Government

We can issue Income tax receipts for donations for those living IN South Africa.

Retha Viviers

**** Foggy Followers, if you are able to help Retha and M.E/C.F.S patients in South Africa by donating to her charity, please click this link. The exchange rates make donations from other countries very beneficial.

Thank you.

The post Meet Team Foggy’s Friend and Founder of ME CFS Foundation South Africa, Retha Viviers first appeared on ME Foggy Dog.

Foggy is enjoying being back at Foggy HQ with Sally, just resting his paws before seeing the delights of Italia! Sally has been worrying a little bit; this is why….

Hi!

Not long to go now!! I will be heading to Marco Polo airport in Venice with my friend Alessia and Foggy in 2 days time. I have been to Venice and Verona before but it will be lovely to see these two beautifully stunning cities again.

Team Foggy will also be heading to Mantua, somewhere new to explore. I am worried because I am already feeling wiped out thanks having to Laryngitis for the past 2 weeks, I am still recovering from that. Which, as any sufferer knows, will probably take a few more weeks before I feel ‘normal’ again. This means that I will probably be feeling like death warmed up already after the hour and a half car journey to Gatwick on Thursday! Change of routine always upsets my M.E. symptoms however lovely that change of routine is.

Once I get to the airport my M.E. senses have to cope with bright lights, noise, busy-ness (is that a word?) and lots of standing up. I am having to plan, as much as possible, how I am going to reserve energy while all this is going on. Obviously sitting and resting is going to be key while we wait for our flight. No airport shopping for me *sob*;I may even put in earplugs to dumb down the surrounding noise. *Sorry Alessia, I don’t think I’m going to be good company in the airport!!* I’m ok with flying. I’ll just close my eyes and deep breathe to lower my heart rate ready for more travelling when we arrive in Venice. Essentially, this is PACING therapy….quiet time without sensory overload.

Team Foggy is staying with Alessia’s parents. This wasn’t organised to help with my symptoms but with hindsight I think it will help greatly. I wont feel pushed to keep going constantly and can take myself off to my room or a quiet space to recharge while Alessia catches up with family. Being in a homely environment is also less stressful than a sterile hotel room.

It also means that Alessia’s dad is picking us up from the airport – THANK YOU ALESSIA’S DAD!! (less stress) and Alessia has offered to drive us around Italy during our stay (again, less stress). So I think this element of the trip is manageable and wont overly attack my energy levels. I can sleep/close my eyes in the car and just let Alessia concentrate on the driving. Much better than noisy trains, bright lights and busy-ness (OK, the non word for the second time!)

Obviously I can’t micro-manage the rest of the trip as I have no idea what is coming up! But, I KNOW I will be tired. That is a given. So, it is an excuse to sit, people watch and take in the wonderful culture. Italy is so beautiful, it is definitely one of my favourite destinations and plan to come back many times over my lifetime – health permitting.

The reason I am worrying? I do not want my health to YET AGAIN have a damaging impact on the holiday of others. Alessia is lovely and would never, ever say that my health annoys her because we can’t be as active as she would like to be (she is ALWAYS on the go!!). From past experience I know that come day 2 or 3 of our trip I will be exhausted. A few days of activity will catch up on me regardless of how much rest I have had; Alessia has told me that if I feel the need to stay and rest in her parents house on that day then so be it. It’s me that doesn’t like that idea!!! Why be in Italy if you are so blooming blah that you can’t get out and about and see the sights? It is my own issues and thoughts that get me upset. I don’t want to let anyone down by being ill. It is frustrating, upsetting and makes me a little bit down if I am honest.

In addition to the energy side of symptoms, I also have to consider my dietary issues. I will be in the land of wonderful, fabulous pizza, pasta and wine. How much of this will I be able to enjoy?…..ZERO. There is no choice in the matter. If I do indulge in anything glutinous the only sights I will be seeing are the inside of many toilet cubicles as we travel around northern Italy!

Not worth it. When I visited Lake Garda a couple of years ago gluten free food wasn’t readily available and the only dessert they could offer me in the hotel was a plate of strawberries. So, I don’t have high hopes!!!  Such a shame but there is nothing I can do about it. I’m not quite sure why I have a reaction to wine but it’s the same as gluten so again, I have to steer clear. Vodka is definitely the way forward! Alessia’s mum has already looked into getting gluten free food from her local supermarket (THANK YOU xx) which is a relief; it will mainly be a problem when we are out and about and staying in a hotel for one night.

I hope you all enjoy the many photos and videos I will be taking; I hope they are worth my ‘unwell-ness’ (yes I know!!! Again not a word).

Ciao

Sally xx

The post Italia!! first appeared on ME Foggy Dog.

Sally keeps telling people where I am going next but I want new Followers to know where I have already been! It’s a long list…ready?….

• Snowdonia, UK
• Royal Albert hall, London, UK
• London, Visa office, UK
• Vindalanda, UK
• Jersey, UK
• Stonehenge, UK
• Bude, Cornwall, UK

and then I went GLOBAL!!

• Kusadasi, Turkey
• Sandown, Isle of Wight, UK
• Christchurch, New Zealand,
• Portland, Santa Cruz, USA
• Florida, USA
• Walhachin, British Columbia
• Bovington, UK
• Reykjavik, Iceland
• Belfast, Northern Ireland
• Copenhagen, Denmark
• Petra, Jordan
• Sicily, Italy
• Malaga, Spain
• Emirates Stadium, London, UK
• Kerala, India
• Melbourne, Australia
• Kapaa, Hawaii, USA
• New York, USA
• Osaka, Japan

Phew!!! I’m loving all of this globetrotting and hope all of my Followers are enjoying my adventures. I am doing this World Tour to raise funds and awareness for the ME Association because my best friend’s favourite human Sally has  M.E. One day she wants a very clever person in a white coat to tell her why she has this horrible illness.

My current mileage stands at 133,600 and I am in Osaka, Japan with Jools having a whale of a time!

Foggy snogs xxxxx

The post Where has Foggy been already? first appeared on ME Foggy Dog.