Dear Secretary of State for Health and Social care, and Minister for Public Health and Prevention,

Across the UK and internationally, clinicians and patient communities are observing a deeply concerning trend: individuals who experience multiple viral infections within a short period are increasingly developing long‑term, debilitating conditions such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./C.F.S.). One recent case involved a person who contracted seven  viral infections (more than 4 different viruses) in six months, with M.E./C.F.S. symptoms appearing only days after the seventh. Whether this was the cumulative effect of repeated immune stress or something specific to that final infection remains unclear, but the pattern itself is becoming impossible to overlook.

COVID‑19 continues to circulate widely, and reinfections have become a normal part of daily life. Each infection carries a risk of immune disruption, and immune dysregulation increases susceptibility to further infections. Repeated infections within short intervals are no longer rare, and this cycle is accelerating the number of people developing post‑viral chronic illnesses, particularly M.E./C.F.S., for which there are no known cures or approved treatments.

A growing body of peer‑reviewed research has shown that SARS‑CoV‑2 can cause long‑lasting immune abnormalities, including T‑cell exhaustion, reduced naïve T‑cell populations, persistent inflammatory signalling, disrupted interferon responses, and evidence of viral persistence in tissues. These findings have been documented in leading journals such as Nature, Cell, Immunity, and The Lancet (see links at the bottom of this open letter). While the long‑term consequences are still being studied, the direction of evidence is clear: COVID‑19 leaves many individuals more vulnerable to subsequent infections, and those infections are more likely to have severe or long‑lasting consequences.

Research comparing M.E./C.F.S. and Long COVID has identified strikingly similar biological features, including impaired energy metabolism, autonomic nervous system dysfunction, neuroinflammation, abnormal cytokine profiles, and post‑exertional symptom exacerbation (or Post Exertional Malaise). This overlap suggests that COVID‑19 is acting as a mass triggering event for M.E./C.F.S.‑like illness, both directly and indirectly.

The UK is already experiencing the consequences.; workforce participation has declined, long‑term sickness rates have risen, disability claims continue to increase, and shortages in skilled labour are becoming more pronounced. The NHS and social care systems are under growing pressure. Long COVID alone has removed an estimated hundreds of thousands of people from the workforce, and the secondary wave, those developing M.E./C.F.S. following repeated infections, adds an additional and largely unmeasured burden. If this trend continues, the economic consequences will be long‑lasting and severe.

Despite mounting evidence, current policy approaches still assume that reinfections are low risk, that repeated viral exposure is acceptable, and that long term consequences are minimal. This assumption is no longer supported by emerging data. The absence of a coordinated national strategy to reduce transmission, improve indoor air quality, or support research into post‑viral illness leaves the UK vulnerable to escalating health and economic costs.

There are clear steps that could mitigate this growing burden: Improving ventilation and air filtration in public buildings, schools, and workplaces would reduce transmission of airborne viruses. Promoting high‑quality masks in healthcare and other high risk settings would protect both staff and patients. Public health messaging should reflect current scientific understanding of reinfection risks. Increased funding for M.E./C.F.S. and Long COVID research, expansion of specialist clinics, and support for biomedical investigation into post‑viral illness mechanisms are urgently needed. Protecting the workforce through flexible policies, reasonable adjustments, and employer guidance would help retain skilled workers. Finally, repeated infections must be recognised as a systemic risk and incorporated into national health security planning, including monitoring and reporting reinfection rates and long term outcomes.

Our population’s immune resilience has been repeatedly challenged over the past six years. Many people now experience colds and flu more severely, recover more slowly, and are more susceptible to additional infections. For some, it has become a form of Russian Roulette, never knowing which infection may lead to a life‑altering chronic illness.

The question is no longer whether this will affect the UK’s health and economy. It already has. The question now is whether policymakers will act decisively, or allow the burden to grow until it becomes unmanageable.

Yours sincerely,

Sally Callow

Person living with M.E since 2006, M.E. campaigner since 2014, and Founder of social enterprises ME Foggy Dog and Stripy Lightbulb CIC.

Open letter also emailed to both the Secretary of State and Minister for Public Health and Prevention.

Peer‑Reviewed Research on Long‑Lasting Immune Abnormalities After SARS‑CoV‑2 Infection

Immunity – “Immune imprinting, breadth of variant recognition, and SARS‑CoV‑2 reinfection” (2022)
https://pubmed.ncbi.nlm.nih.gov/35148837/

Nature – “Longitudinal analyses reveal immunological misfiring in severe COVID‑19” (2020)
https://www.nature.com/articles/s41586-020-2588-y

Nature Immunology – “SARS‑CoV‑2 infection induces long‑lived bone marrow plasma cells in humans” (2021)
https://www.nature.com/articles/s41586-021-03647-4

Nature – “Immunological dysfunction persists for 8 months following initial mild‑to‑moderate SARS‑CoV‑2 infection” (2021)
https://www.nature.com/articles/s41590-021-01113-x

Cell – “Longitudinal immune profiling reveals distinct immune response patterns in COVID‑19” (2020)
https://www.cell.com/cell/fulltext/S0092-8674(20)30610-3

Nature – “SARS‑CoV‑2 infection and persistence throughout the human body and brain” (2022)
https://www.nature.com/articles/s41586-022-05542-y

Frontiers in Aging Neuroscience – Intestinal barrier compromise, viral persistence, and immune dysregulation converge on neurological sequelae in Long COVID (2026)

https://pmc.ncbi.nlm.nih.gov/articles/PMC12864456/

The Lancet – “Long COVID: pathophysiology and mechanism” (2023)
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(23)00355-4/fulltext

Nature Communications – “SARS‑CoV‑2 infection induces long‑term immune dysregulation” (2023)
https://www.nature.com/articles/s41467-023-38129-0

The post The Emerging Public Health and Economic Threat of Repeated Viral Infections and M.E./C.F.S. : Open Letter to Wes Streeting and Sharon Hodgson MP first appeared on ME Foggy Dog.

The comments which are the focus of this blog are below –

‘”bound” it’s not 1972. You can simply say those not able to attend in person, you don’t need to use offence, outdated language to police the Good Crip boundary.’

I commented in reply –

‘It’s the language used by those with lived experience so it is not the wrong language.’

Their reply –

‘What absolute bollocks. You can use any language you choose to describe YOUR lived experience, you don’t get to impose YOUR choice of language over the top of the hard bloody work disability activists and researchers have done on correcting ableist, offensive language.

If you want to describe yourself as ‘house-bound’ you are welcome to, that doesn’t make it acceptable for journos to completely ignore professional writing standards that don’t reinforce stigma, which this dreadful line does.

The swift and vehement condemnation of my comment as ‘absolute bollocks’ and stating that house-or-bedbound was ‘ableist, offensive language’ by a self-described disability rights lawyer, academic, and employer of disabled people highlights a disconnect. While I, as ME Foggy Dog, unequivocally supports the invaluable work of disability activists in dismantling harmful language, and phrases like ‘wheelchair-bound’ are indeed unacceptable, it’s crucial to understand why, for many within the chronically sick community, ‘house-or-bedbound’ is not only not offensive, but an accurate and necessary descriptor of their reality.

The social model of disability rightly emphasises that disability is not an inherent flaw in an individual, but rather a consequence of societal barriers. For many disabled people, these barriers manifest as inaccessible infrastructure, discriminatory attitudes, and lack of reasonable adjustments. The fight against language that reinforces these societal failures is paramount. AGREED.

However, for those of us with ELCs, our primary barriers, as a community, are distinct and often overlooked:

• Underfunding of Research: A shocking lack of investment in understanding the biological mechanisms of conditions like M.E. leaves millions without diagnosis, effective treatments, or hope for recovery.
• Lack of Treatments: The direct consequence of underfunding is a significant void in care and treatment options. We are not simply unaccommodated; we are often abandoned by medical science.
• Neglect of Healthcare: From dismissive doctors to inadequate support services, the healthcare system often fails to recognise, validate, or treat our conditions, leaving us to navigate debilitating symptoms with little to no professional guidance.

When we are house-or-bedbound, it is not primarily because a ramp is missing, or a workplace is unwilling to make accommodations (though these are also issues). It is because our bodies are fundamentally, biologically compromised, often to the point of profound and sustained physical collapse. The post-exertional malaise, pain, cognitive dysfunction, and extreme exhaustion are not merely inconveniences; they are deeply incapacitating symptoms that physically restrict us.

‘The Canary’s’ response to this linguistic debate perfectly encapsulates the thoughts of many in our community:

‘For reference [name], this article was written by someone with lived experience of chronic illness. Nearly 50% of the Canary team are chronically ill and disabled. We are all aware of the social model of disability and why language like ‘wheelchair bound’ is unacceptable. However, in this context – particularly for chronically ill disabled people living with ELCs – being confined to your house or bed due to society catastrophically failing you is a restraint, and is certainly not something that should be watered down by using phrases like ‘not able to attend in person’ – as this is downplaying the reality of millions of chronically ill disabled people’s experience.’

I posted this question on social media in the immediate aftermath of this Facebook discussion-

 ‘Is there a different term we use that I am unaware of? Where the term ‘bedbound’ is concerned I take the lead from YOU #pwME . It’s the term so many of you use.

Is this a chronically sick v disabled language issue?’

Here are some of the replies – 

‘Given their life success, they may have a disability that isn’t as necessarily life-limiting as ours. They assume we can’t mean “bedbound” and “housebound” literally, which is erasure. Describing our reality isn’t stigmatizing, but policing our language around it actually is.’  N.C. (Twitter) 

‘Language prohibitions are generally a very bad idea in the disability community. Makes chronic illness look like a culture war issue and an identity stance rather than a biological reality.’  V.V. (Twitter)

‘Bedbound & housebound (with rough % for each) – I use both to check, and describe, my own functionality level.’ M.A. (Facebook)

‘This is just silly. Many wheelchair users who aren’t sick object to ‘wheelchair bound’ because their wheelchair is their aid to mobility & freedom. But being in a bed or a house is nobody’s aid to freedom. Hence bedbound & housebound fine. And accurate for mod/severe MECFS.  A.G. (Twitter)

‘I am predominantly ‘house bound’ and that is the term I use to describe it!’ S.C. (Facebook)

‘I’m ‘house bound’ and openly say it! (One alternative I’ve heard from the US is ‘shut in’ which is 1000% worse!).  J.C. (Twitter)

‘Blimey, I use the term housebound because I pretty much am, and bedbound because a lot of time is spent on my bed. What else can, sorry, should I be using about my own circumstances?’   C.E. (Facebook)

‘I think there is a big difference between disabled and chronically ill that is not understood by many who are not chronically ill.  You can be disabled and not chronically ill but if you are chronically ill you are also disabled. People see disabled individuals achieving things and saying they won’t let their disability stop them which is such a toxic narrative in itself but most definitely can’t be applied to chronic illness/certain disabilities. Chronic illness does stop things, at differing levels for different illnesses but it’s not something that can just be pushed through without having a detrimental effect. It really frustrates me that healthy and disabled people don’t see this difference. C.N. (Facebook)

‘I think there is a little bit of confusion on different types of disabilities. It can be an accurate term for those of us with ME, but not for those who are still able to work as she is describing. I don’t know of any reason why housebound or bedbound isn’t appropriate for ME.’  S (Twitter)

Thank you to all who responded to my question online from within the ELC community.

This is not about imposing our language on others; it’s about accurately reflecting our lived experience. To suggest that ‘not able to attend in person’ is a suitable replacement for ‘house-or-bedbound’ is to profoundly misunderstand the nature of our disability. It sanitises and diminishes the severity of our illness. We are not merely ‘unable to attend’, we are physically restrained by the limitations of our illness, limitations that are exacerbated by a society that has catastrophically failed to provide us with the research, treatments, and understanding we desperately need.

The word ‘bound’ in ‘house-or-bedbound’ in this context isn’t about an external, oppressive force, but about an internal, physiological reality. It speaks to the severe restriction of movement and activity that defines daily life for many with ELCs. It communicates the profound impact of our conditions far more effectively than euphemisms.

While ME Foggy Dog, as a social enterprise, stands in solidarity with the broader disability rights movement and its fight against ableist language, we also ask for nuance and empathy when discussing the unique challenges of ELCs. Our fight is not just for accessibility, but for recognition of the biological underpinnings of our illness, for scientific advancement, and for a healthcare system that does not neglect us.

When individuals in our community, and those who represent us (as is the case with The Canary), use terms like ‘house-or-bedbound,’ it is not to reinforce stigma, but to articulate the stark reality of our lives,  a reality shaped by profound illness and societal neglect. Let us not allow debates about language to overshadow the urgent need for meaningful change in research funding, treatment development, and healthcare provision for the chronically sick community. Our words are not meant to offend; they are meant to be understood.

ps. I have deliberately not shared the link to the original Facebook post as I do not want there to be a pile-on, our community has enough divisiveness to deal with at the moment.

Sally

The post ‘House-or-bedbound’: Accurate Lived Experience, Not Offensive Language 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.

I don’t know about you but, for me, 2021 flew by!

I’ve not kept track of what month we are in throughout the entire year! It’s all been very same-y and seasons have all blended from one to the other. I haven’t had the usual Foggy ‘milestones’ to judge where I’m at. This is mostly due to shielding 98% of the time, my life has been devoid of social cues – other than those seen on social media or in private Whatsapp messages.

2021 has been a pretty rubbish year all-round but I’m going to squeeze my memory bank to come up with some positives.

My first post of 2021 (1st January 2021 at 08.15)

Did our dreams come true?

Here are the highlights of 2021 for Team Foggy.

Awareness

‘What is M.E? (January 2021)

Watch   What is M.E?

Video recorded during lockdown, completely a DIY effort and from a very dodgy camera angle but….with the help of a ‘video-editor’ this video was produced. A combination of worsening illness and software no longer being available = my brain can’t cope with complicated video editing like it used to in 2014-2018! Long term Foggy Followers will know that my content has changed over recent years….in fact, since my Windows 7 died. RIP. You are missed!

Press Nonsense

There has been a LOT of reactive negative, but necessary, stuff that has had to be addressed over the past year. PG being on BBC Breakfast and being unchallenged after erroneous claims were made, inaccurate and downright offensive rubbish has been printed in the UK press ALL YEAR. My advocacy has reflected that. I started an ‘Online Journalist Resource’ but stopped my efforts when it became clear that other orgs were doing the same. As with all people with M.E, I have such limited energy, I don’t waste it on duplication. It’s wasted effort and energy.

Legal Fund

Then came the ‘Legal Fund’.

Blog post – M.E/C.F.S Patients’ Legal Fund. (Explainer video) I thought this was such a good idea but I found many M.E patients couldn’t understand what the money would be used for. I did as much as I could to increase understanding but this was another idea, start of a campaign, that came to nothing. Thank you to the MANY advocates and pwME that privately messaged me with support during these stressful weeks. There have been a few instances since where this legal fund would have been a great asset for our community to have but, that idea has now been and gone.

Fundraising

Watch this – How we fundraise  THIS is the case whether Team Foggy are actively campaigning or not. You can donate all-year round via Paypal – link/button is on our home page –  mefoggydog.org .  Cure ME are currently requesting donations, they need funding. If you donate via Paypal through ME Foggy Dog please make it clear it is for Cure ME and we will allocate accordingly.

Team Foggy’s AWESOME friend Ryn and her husband John displayed fantastic entrepreneurial spirit during the summer and raised £488 to be split 50/50 between   Cure ME and ME Foggy Dog. They had a flower stall outside their home for months and neighbours, family, and friends donated plants, pots, and other items to sell. Fantastic community spirit!! Ryn is already planning on repeating this mini-enterprise next year. All money raised for ME Foggy Dog will be put towards our future fundraising events for Cure ME.  Ryn and John’s ‘flower stall’ fundraising featured in a LSHTM blog post! ME Fundraiser  – Ryn Stevens.

Long Covid and M.E/C.F.S overlap

This is something that has been making my head hurt for over 18 months.  Watch – My recommendations for managing Long Covid. It’s been tough, HARD work trying to get local/central Government to listen. They are all stuck on the ‘it’s a completely new phenomenon’. Uh….nope. Extra frustrating given that we KNOW that many Long Covid cases are being diagnosed as M.E/C.F.S.

M.E Awareness Week 2021

Ha! The plan was to ‘cut back’ on my activities during our awareness week. I raise awareness all-year round so any increase wipes me out. I ended up doing more work than ever within a shorter period of time. As I said at the time, M.E patients were not my target audience (though I was grateful to all who tuned in) and so the length of the ‘talk’ was appropriate for ‘healthy’ people not M.E patients. As I’ve said a million times since 2014, we should always reach outside of our bubble with our awareness efforts. So, you can imagine how surprised I was to be criticised, by people within our community, for holding an awareness event that was 1 hr 15 minutes in length. Particularly given that most business webinars and online events I tune in to every week are the same length of time. It caused a significant crash but I was happy with the turnout and feedback from ‘healthies’.  Watch it here – in chunks if you have M.E! Read about how it went!

The NICE ‘Pause’

Blog  – This was written BEFORE the nonsense started. So, this blog is a positive highlight!

Team Foggy had T-shirts  and a strong opinion about the delay!

Read our article in Posability Magazine (Pgs 48-49)  ‘An Unprecedented Pause’

The NICE Publication!

29th October 2021, not as all-changing as we would have liked and it is increasingly clear that many medics/NHS/Department of Health and Social Care simply will not budge with their false beliefs re. exercise and CBT for M.E.

So…..

ME Foggy Dog launched a petition…..and then a wider campaign.

Shake It Up!

This has kept me busy and out of trouble for the past 4 months, the petition was launched on 2nd November and the wider campaign, with the help of Kat Gower, went ‘live’ on 25th November 2021. I’m in no doubt that this will be a hard slog and may well be ongoing over Summer 2022 and beyond. It will involve a complete 180 degree turn in mindset.

Podcast – ‘Shake It Up’! (available for 90 days) I was joined by Kat Gower, Linda Hending, and Steve Topple for a chat about the need for this new system. Also available in our Patreon channel podcast ‘archive’.

‘Transcript – FogPod ‘Shake It Up”

Please do sign the petition and take part in the ‘Shake It UP’ campaign. Every signature (anyone, anywhere, can sign) and/or email to your MP and Lord Kamall (UK residents only) counts and matter to me personally (Thank you).

Steve Topple (The Canary) wrote this article about the issue we are tackling with ‘Shake It Up’. Thanks again Steve.

There are more ‘phases’ of this campaign to come in 2022, please do keep your eyes peeled for the latest developments on whatever social media channel you use.

ME Foggy Dog has a presence online in a lot of different places!

Our website – mefoggydog.org

E-newsletter (sign up in  the footer of the website)

Twitter – @mefoggydog

Facebook – @FoggyDog

Instagram – @mefoggydog

Spotify

Buzzsprout

Google My Business – If you are a fan of Team Foggy, could you leave us a review? Let people know how awesome we are? Review us

We Are A Social Enterprise!

ME Foggy Dog has been a social enterprise since September 2018, it became one at the same time that I launched Stripy Lightbulb CIC. ME Foggy Dog has won awards as a social enterprise. But…..I forgot to become a member of Social Enterprise UK until this week. MY M.E brain thought that I did this years ago as I have participated in SEUK campaigns and won an ‘award’ from them…doh. So, Foggy now has a couple of shiny new badges on his website. Social Enterprise UK has been very supportive of all of my M.E work for a few years now…I can’t believe (I have M.E – it’s easy to believe!)  I forgot to join their membership.

Shiny new badges –

Anyone unsure of what a social enterprise is?

It’s a not-for-profit business that works for the benefit of a cause or community. There are different business models within the term ‘social enterprise’, ME Foggy Dog is a sole trader model.  I run it like a normal ‘sole trader’ business but 50% of our surplus (AKA profit), when we make some, will go to Cure ME for biomedical research. We are continuing with our fun fundraising campaigns too so from the outside it doesn’t look like we’ve changed much over the years but….we have! It doesn’t help that one year into becoming a business,  I had put ME Foggy Dog to one side while I concentrated on Stripy Lightbulb CIC for the first year, the pandemic hit and most of our revenue streams were not possible. That’s why we haven’t made a surplus (profit) YET. It’ll happen…..one day!

In our case, we work for the benefit of the M.E/C.F.S community.

Always have, always will.

2022….here we come!

We are reeeeeeeeally looking forward to injecting a bit of fun and globetrotting back into our lives. Hopefully, that will be possible in 2022. As I have said a number of times during the pandemic, our usual ‘World Tour’ activities are simply too risky given that ‘Foggy-sitting’ involves trips out and taking Foggy to the ‘Departure Lounge’ (Post Office). That’s simply not possible when so many countries are intermittently in lockdown and I wouldn’t ask an M.E patient or their family to put themselves at risk of catching COVID19 so Foggy can get home.

If you have any ideas re. fundraising during the pandemic please let me know!! It’s frustrating as in February 2020 I had MANY plans afoot in terms of face-to-face fundraising events. All scrapped/on hold.

That’s it.

That’s our 2021 wrapped up in blog form.

We hope you have enjoyed following us this year, it’s certainly been a rollercoaster!!

I’ll be stepping away from ME Foggy Dog between 21st December 2021 and 2nd January 2022. I need to recharge and reset ready to tackle whatever 2022 throws at us!

Wishing you all a Happy Christmas and, whatever you are able to manage, we hope that you are able to take some joy from the Christmas period. Please know that if you do find you are struggling in terms of your mental health there will be organisations available 24/7 to help and support you. You are not alone.

Ho ho ho!!

Love

Sally

and Foggy (OBVIOUSLY)

xxxxxxx

The post ME Foggy Dog’s Highlights of 2021 first appeared on ME Foggy Dog.

This will be a lazy blog post as I am ‘depleted’ of energy…or at least, I have just about enough left to type this up briefly!

Watch this video

http://https://youtu.be/1Qabwxufnlg

Read these links –

Guide to the rules on APPGs

Myalgic Encephalomyelitis APPG

Register of All Party Parliamentary Groups – M.E

After reading and watching those links you are now up to speed with where I was at when I emailed the Office of the Parliamentary Commissioner for Standards with this email:

The post APPGs on Myalgic Encephalomyelitis – Where are the minutes? first appeared on ME Foggy Dog.

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 an advocate requires a degree of responsibility and care. I deliberately steer clear of causing additional anxiety and dismay unless I feel there is a benefit to raising awareness of something that has happened.

Since The OT Show in November, I have debated about whether to mention something to Foggy’s Followers, many of whom have M.E themselves. Initially, I took it to heart and only saw the negativity in what was said. However, with time and with a fresh year approaching, I am able to put a positive spin on it.

So, here goes.

The Stripy Lightbulb team’s ‘hook’ to get people to talk to us was ‘What do you know about M.E/C.F.S?’ (Remember I do both names with Stripy Lightbulb as it is an online training platform – people need to know why we have more than one name. I now only use M.E with Foggy). The response was mixed as some admitted they didn’t know what M.E/C.F.S was but would be happy to learn, a few had personal knowledge with family members having the illness, a rare few fully understood what M.E/C.F.S was, and others simply ignored us and kept walking.

One particular Occupational Therapist answered me with ‘M.E? Oh yeah, that’s the trendy thing to care about now, isn’t it? I don’t need to know about that, it’s all a fuss about nothing, Occupational Therapists don’t need to know about M.E/C.F.S’. As a patient, I took that negatively, in my mind her response summed up how I had been treated by the majority of healthcare professionals over the past 13 years since I ‘contracted’ M.E. I was slightly flabbergasted and couldn’t think of a reply before she walked away. Why can I never come up with quick replies? Oh – could be because my M.E affects my brain! It has, clearly, stuck with me and it’s something that upset me.

However, over 5 weeks later, I can put a positive spin on what she said. ‘That’s the trendy thing to care about now, isn’t it?’ suggests that she is aware of M.E advocacy, possibly aware of the M.E debate in Parliament this year, it means that we are VISIBLE. Whether she chooses to accept M.E/C.F.S as real or not, her words have implied that she is aware of the hard work of the many advocates and charities who are working blooming hard to bring about change.

I’m not naive, she was deliberately choosing negativity but I choose not to be drawn into it. I/we are ‘trendy’! Can you feel the tide turning? Even a little bit? I can….ever so slightly….tiny ripples are starting to form. Her words have turned into a motivator, I’d like to thank her and everyone else who directs negativity in my direction. You spur me on and open my eyes to the fact that, although we are making tiny steps in terms of progress, we still have a long way to go.

Happy New Year to all of Foggy’s Followers! Foggy and I wish you all oodles of love and hope that 2020 brings better health, love (in whatever form it takes), and progress for us all xxxxxx

p.s Foggy has had an AWESOME time in Mexico – he loved the foam party! (see pic)

Don’t forget to donate. Foggy isn’t just for fun, he’s for fun-draising! Donate here> https://www.justgiving.com/fundraising/mefoggydog

Thank you x

The post Clock is ticking….. first appeared on ME Foggy Dog.

Foggy is bouncing up and down on the sofa so I’ve left him to it and come upstairs to BED. A Spotify playlist is playing softly next to me and I’m leaning against pillows as I type this.

It struck me earlier that I haven’t written a blog for a while so I have plenty to tell you about!

If you are a regular on social media, you will have seen that Stripylightbulb.com went live yesterday. The timing wasn’t deliberate, everything just came together on the same day as the M.E debate in Parliament. It felt so good to have even more positive M.E./C.F.S. news to add to the mix. I now have around 60 days to finish creating the e-learning platform. EEK. I know my stuff so I’m not worried about the content, it’s just putting it into bite-sized chunks of easy-to-understand learning that’s going to be the tricky bit!! It’s also going to be CPD accredited so there is a little bit of extra pressure there.

I need to do a special shoutout to everyone who has offered information, advice, statistics, shared research papers with me or generally been very supportive. Some days, it can feel a bit overwhelming, so your support means a heck of a lot. As I said in my video post yesterday, Stripy wouldn’t have been possible without those of you who donated to the crowdfunding effort last year. I’ll never forget your generosity. Thank you.

My health is one of our business objectives. Trust me, it gets discussed at every Director’s meeting, to my annoyance! I chose my Directors carefully and it is paying off now. They are reminding me that without me there is no business. So, my health is the top priority. That is why I am trying so hard to stick to 4 working hours a day (in small chunks). As I explained to them at our last meeting, my M.E./C.F.S. hasn’t stopped me from being as driven about making the business a success as any other business owner would be. Success= research funding, more adequate support, and reduced stigma. That’s what drives me and I can’t easily turn my brain off from thinking about how to make the business grow. It’s really hard to turn off but I have to or I’ll push myself too hard. Just know I am in safe hands with Bianca and John (my Directors).

What about Foggy? Foggy is taking a well-earned break from globetrotting at the moment (As the blog photo shows, Foggy is grounded at the moment!)I’ve decided that his next adventure will launch during M.E. Awareness Week. Makes sense…doesn’t it? I don’t know why I haven’t done that before! I had hoped to do a BIG/SIGNIFICANT awareness event in London but that is 100% dependent on getting funding and/or FogPod raising cash to pay for it. So, if you have been putting off becoming a Patron for whatever reason, please consider doing so now. There are 2 patronage tiers (per month for weekly podcasts) – $1.99 and $7. $1.99 is to subscribe to the podcast only (and other free content), the $7 means you’ll get a gift from Foggy after every 2 months of patronage. Please help to grow FogPod by sharing the love.

This social enterprise malarky is a huge learning curve. There is so much new stuff to learn every day….with my foggy brain! This week, I’m getting my head around creating mailing list databases and mail merge…UGH. I’m still looking for volunteers. If you are able to help with admin or marketing in a VOLUNTARY position, please do let me know. See THIS advert – https://do-it.org/organisations/stripy-lightbulb-cic for info.

This week has seen the M.E. debate, a response to my mandatory reconciliation from the DWP (I am still zero disabled…apparently), and C.F.S. got mentioned in a Munchausen by proxy case on Casualty (Grrrrrr). It’s certainly been eventful!

Love

Sally (and Foggy OBVIOUSLY)

xxxx

p.s. Here’s the link to sign up to FogPod. https://www.patreon.com/FogPod

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