Every day, due to the symptom/characteristic of unrefreshing sleep,  people living with M.E. wake up already exhausted, only to be hit by a tsunami wave of hate and disbelief online and in the media. ‘Influencers’, shock jocks, journalists, politicians, and even some healthcare professionals spread harmful rhetoric—claiming M.E. doesn’t exist, that people living with M.E. are lazy or malingerers, or that they just need to try harder.  This constant barrage of negativity is far more impactful than hurtful words; it’s a never-ending relentless attack that drains energy. Every time a person living with M.E has to defend their illness, justify their struggles, or fight for basic rights, it diverts valuable energy that could have been used for essential daily tasks. This is energy theft—taking from people who have so little to begin with.

It’s 2025, and the COVID19 pandemic is still ongoing. Yet the world pretends it’s over. For people with M.E.—many of whom are at high risk or have had their illness worsened by COVID19 infections—this denial is another knife to swerve. Mask wearers are ridiculed, air filtration is ignored, and society has ‘moved on’, leaving behind those who are still vulnerable. Every trip outside is fraught with danger, and many people with M.E. are forced into choosing isolation to avoid a further deterioration of health. This constant stress, unease, and exclusion from society drain even more energy. Society’s refusal to acknowledge reality isn’t just frustrating—it’s physically harmful to those who are most at risk.

If hate speech and pandemic denial are knives, then politicians wield the largest, sharpest blades. They have the power to push for change—to fund research, provide disability support, and make public spaces safer. But instead, they cut funding, deny benefits, and dismiss the needs and rights of the chronically ill.  By ignoring Long COVID and post-viral illnesses like M.E., politicians ensure that more people will develop these conditions without an appropriate safety net. Their policies don’t just make life harder; they actively harm the most vulnerable. Every cruel decision—every budget cut, every denial that COVID19 is airborne,  every ignored plea—steals even more energy from people who are already running on empty.

Unlike the Spoon Theory, which focuses on natural energy limits, the Knives Out Theory shows how society makes energy ‘management’ even harder. Hate, denial, and political neglect aren’t just background noise; they are deliberate assaults on the lives of people with M.E.  The knives are always out for people living with M.E. who are already struggling in a world that refuses to accommodate us. Until society stops throwing knives, the energy stolen by stigma, denial, and neglect will keep pushing people further into the shadows.

Let’s turn it into a ‘game’!

Knives Out: Energy Theft Edition

Objective:
The objective is to maintain limited energy reserves while dodging ‘knives’ that represent hateful comments (online, in print, and in person), denial, and neglect.

Setup:
Player start with a set number of  10 daily ‘energy points’. These points cannot be carried over to the next day.

Game Components:
1. **Energy Points:** Represent the player’s ability to engage in daily life tasks.
2. **Knives** Each knife represents a negative encounter  –  see possible scenarios below.

Possible scenarios:
Social media encounter:  Player sees a negative post on their news feed that drains energy. If they don’t respond to the post –  lose 2 energy points. Responding –  lose 3 energy points.
Visit to see a healthcare professional: – An unsupportive interaction that affects energy levels due to induced stress – lose 4 energy points (long term impact of stress, negativity and stigma).
Going out in public to a non-health related setting: Facing negative societal interactions (COVID19 or disability) eg. tutting, comments, eyerolls, deliberate coughing – lose 2 energy points for each occurrence.

End of the Game:
The game ends when the player runs out of energy points. Please mark the end of YOUR game by posting #KnivesOutImOut on social media and how many instances of negativity you encountered that day.

If a player finishes the day with some energy left, they are considered to have successfully dodged the knives!(How did you do that?! Well done!) Please remember knives are entirely separate to energy management through pacing. This is energy lost entirely due to negativity of the types mentioned in this blog.

I for one will now be responding to any hateful posts or comments from the media and politicians by posting – ‘Thank you for playing ‘Knives Out: Energy Theft Edition’. Maybe it will start to open a few eyes to the physical impact of hateful rhetoric on people living with M.E.

This topic was inspired by an X post by Kelly (@broadwaybabyto) earlier today in which she wrote-

We need a revised “Spoon Theory” that takes into account being chronically ill amidst 2025 chaos The moment you check your news feed you’re out of spoons Most articles are like knives being flung into your cutlery drawer against your will Protecting baseline is hard right now’.

PS. This has given me an idea for a board game, just in case I go forward with this idea in future I am claiming copyright NOW!. ME Foggy Dog 6th February 2025.

PPS. ‘M.E.’ is inclusive of all people who meet the diagnostic criteria for M.E whether diagnosed (or not) or living under the umbrella term of Long COVID.

The post ‘Knives Out Theory’: How Hate, COVID19 Denial, and Neglect Drain the Energy of People with M.E. first appeared on ME Foggy Dog.

The eagle-eyed amongst you will have seen a social media post from me yesterday saying I am stepping away from Foggy’s social media for 2 weeks. I quickly deleted the posts as I thought a blog would be a good way to explain my reasoning. So, here’s the announcement-

I’m stepping away from Foggy’s social media for two weeks.

Here’s why –

• I have been struggling to find my ‘new normal’ since having M.E and Long Covid. The added complications of vaccines and stressful social media posts that require immediate attention have meant that I have been unable to calm everything down and ‘settle’ to a new baseline. I believe a break will allow me to do that more effectively.
• The NICE guidelines review is due to be published on 20th August 2021. I can predict with 100% certainty that all sorts of nonsense will be printed about M.E and C.F.S patients courtesy of the BPS (psychologists & friends) crew between now and then. I am saving myself the stress of having to react and rebut the accusations and false claims. If I don’t see it…..
• The NICE guidance review is going to be HUGE for our community (Still doing a NICE equivalent to a rain dance…it’s not ‘in the bag’ yet). I am going to need to be as ‘settled’ and raring to go as I possibly can be so ‘self-care’ is a priority now, even more so than usual.

My body is definitely struggling with the additional ‘stuff’ that has hit it over the past 18 months. As I have said numerous times, it is hard to know if new symptoms are simply M.E symptoms that I didn’t have prior to Covid19 but have been triggered by the virus, or if it is an entirely different disease/condition – MCAS etc. Either way, there is no treatment; I know that. I have reached the point at which I have started saying ‘there is no point contacting the GP’ about my Long Covid symptoms (16 months).

My Autonomic Nervous System seems to have taken the biggest hit from Covid19. One thing I have been struck by is my temperature control issues have completely changed. Throughout my time as a M.E patient, I have felt ‘icy’ at night and needed to wear thermal socks and have 2+ blankets at night. Not any more. I haven’t worn socks to bed for months and I now only sleep with one duvet – like a ‘muggle’ does! However, I now feel hot…not cold. My ANS issues have now affected my breathing, my Long Covid clinic Respiratory physio tested for all other causes of breathing issues and said ‘there is nothing we can do to fix it, your body, your ANS, has forgotten how to breathe’. I believe this is why so many PWME have told me they also have breathing issues, whether their M.E was triggered by a respiratory virus or not.

Faulty ANS issues have also caused me to inappropriately scream and/or squeal whilst watching very slightly scary TV programmes….funny for me….annoying for my family who have narrowly avoided having heart attacks as a result!

I also have excessive thirst which has been investigated by my dentist and Drs. There are no ‘anomalies’ in my mouth and Diabetes has been ruled out. Again, no explanation other than, my body no longer recognises when I am thirsty so pushes me to drink….all the time. I am currently drinking 4 litres a day. I’ve now been told ‘drinking too much won’t kill you, just try to stop yourself from drinking too much’….cheers!

ME Foggy Dog is a social enterprise (not for profit business) and so I don’t take the decision to step away lightly. Advocacy work is always very important and I feel constant demands on my time 24/7, however – if I don’t look after myself now I may not be able to continue doing the work I do over a much longer term. Close friends (confidantes – you know who you are – thank you) within the M.E community know that I have been struggling for a while and have spoken about closing both ME Foggy Dog and Stripy Lightbulb CIC to concentrate on myself. I do the day-to-day running of both social enterprises singlehandedly. Something I was able to do, with difficulty, before Covid19 hit me but now I’m not so sure. I’m still taking it one day at a time. At the moment, both my heart and my head hate the prospect of stepping away permanently as I fully recognise the urgent need for both. However, continually banging my head against hard immovable brick walls is starting to take its toll on my personal health.

Thank you to everyone who recognises and understands that ME Foggy Dog is much more than social media posts and who support the work I do away from ‘timelines’ and ‘newsfeeds’. This is the work I will be concentrating on over the next 2 weeks. ‘Stepping away;’ from social media will simply give me much more head space and will give me the opportunity to calm everything down. Keeping everything crossed that I will find my ‘new normal’ in the near future.

Take care of yourselves and see you soon.

Love

Sally

and Foggy (OBVIOUSLY) xxxxx

p.s. Don’t forget that MEfoggydog.org is Foggy’s online home – take a look for merchandise, donating, podcasts, and our news!

The post Reset first appeared on ME Foggy Dog.