Aimee Jones retweeted
Let’s talk about the push–crash cycle.
Exceeding your energy limits can lead to a crash and a flare in symptoms.
How do YOU break the cycle? Share your pacing tips + tools.
➡Resource: bit.ly/43YkMVi
#MECFS #LongCOVID #PushCrashCycle @openmedf
Aimee Jones retweeted
1/ 🧵 Key points from @LongCOVIDPhysio & @WorkingWithLC joint response to UK #PathwaysToWork Green paper consultation.
This was an evidence based submission with shared lived experience & insights gathered over the last five years
#LongCovid
nitter.gq/JCeoltaSmith/status/19…
Absolutely @UKLabour minsters know the harms. In our joint Green Paper #PathwaysToWork response ie from @LongCOVIDPhysio & @WorkingWithLC we laid out the evidence base & cited @gerrymccartney1 along with
@johnpringdns ...
#WelfareReformHarmsHealth
@crr7310 @sunsopeningband
Aimee Jones retweeted
I've written a new blog for @thereforme.uk about rest - something I feel deeply about.
I talk about how, as an athlete, rest was respected - a sign of discipline and strength. But living with ME/Long Covid, rest became something judged and misunderstood.
Link in next tweet👇🏻
Aimee Jones retweeted
Now they've cancelled taking £300 from pensioners on £35,000, perhaps they can cancel taking £8,000–£10,000 from chronically ill and disabled people with incomes of around £15,000.
#takingthepip
Aimee Jones retweeted
This 👇
We are being contacted regularly by exasperated disabled people who are at their wits end because they aren’t getting trade Union support at vital points in their #LongCovid journey. It’s disappointing at best and neglectful at worst. @theRCN @unitetheunion @unisonhealth
The latest pay disputes are highly triggering for those of us with #LongCovid. Trade Unions are shouting about @NHSuk staff not being valued with low pay, but we are still getting messages weekly about members who cannot access support for IHR, dismissal or phased returns. 1/2
Aimee Jones retweeted
The latest pay disputes are highly triggering for those of us with #LongCovid. Trade Unions are shouting about @NHSuk staff not being valued with low pay, but we are still getting messages weekly about members who cannot access support for IHR, dismissal or phased returns. 1/2
Aimee Jones retweeted
A journalist / media request…
📕 launching my book in 2 weeks
🎤 Happy to do interviews / podcasts etc
🐕 Can talk dogs / mental health / depression etc
My dream is to get the book to number 1 for Tina.
Mail me [email protected] will do as many as I can 🙏🥰
Aimee Jones retweeted
The Guardian have documented a year in my life living with #LongCovid.
Please watch this short documentary to learn what it's like living with this debilitating disease and why we need urgent treatments.
theguardian.com/society/vide…
Aimee Jones retweeted
Not one mention of Long Covid in the Get Britain Working White Paper.
Govt still ignoring NHS staff & frontline workers, who put their lives on the line during the pandemic, now suffering with the condition.
We urgently need to recognise Long Covid as an occupational disease.
Aimee Jones retweeted
Time for your government to prioritise this and the endless #Covid fraud @Keir_Starmer
The money retrieved could support those with #LongCovid and those injured on the frontline. They are missing from society still!
Over 130 Covid contracts marked as high risk, or £15.3bn of public money awarded by the Conservative government and over 232,000 deaths.
Can someone remind me why there is no criminal investigation with @BorisJohnson at the heart of it?😡
#ToryCorruption
#CovidInquiry
#ToryLies
Aimee Jones retweeted
Great to see @nmcnews have listened to the voices of disabled registrants (including those with Long Covid).
@MichaelaBarnard (one of our trustees) and Dee Burrows (one of our volunteers) were part of this work.
nursingtimes.net/news/profes… @NursingTimes @EddChurch @LCNMUK @theRCN
Aimee Jones retweeted
For more on how to be an effective advocate for a disabled or chronically ill patient (and why it’s necessary) … here’s my article dedicated to the subject of advocacy in hospitals: disabledginger.com/p/how-to-…
Aimee Jones retweeted
Powerful testimony from @agy_lena on Natasha Devon's @LBC show last night. Talking about #SevereME and everything she's lost, as well as the power of social media for our community. Thank you to @ABrokenBattery for making it easy to create this clip. #MECFS
Aimee Jones retweeted
🚨Big thanks to @Ruth5News for her latest #LongCovid report:
“Previous research has compared the impact of Long Covid as being akin to having stage 4 cancer. Can you imagine having cancer and people telling you it was all in your head or that you were malingering or work shy”
A new report has revealed that there are inequalities between rates of Long Covid between the North and South of England.
Our reporter @Ruth5News, who was living with Long Covid for two and a half years, has been finding out.
Aimee Jones retweeted
Why do we feel sick when we are sick?
It is called traditionally called 'sickness behaviour' which like most terminology in chronic illness is problematic as it has little to do with actual "behaviour" beyond the obvious (think about what your dog or cat is like/does when it is sick) and the location in the brain which drives much of these patterns (the brainstem).
A much better term for it is "sickness metabolism"
It has much more to do with how your body changes its biochemistry to go into 'infection-fighting mode' and what happens when we get STUCK in that mode (like we do in conditions like #MECFS #LongCovid).
"The purpose of sickness metabolism is to generate a metabolic environment in which the body is optimally able to fight infection while denying vital nutrients for the replication of pathogens."
In some chronic illnesses 'sickness metabolism' stays on indefinitely - while this sounds bad (obviously) it is actually a bigger issue than you might think.
This is because it starts a process of MALNUTRITION and mineral and nutrient depletion that then makes getting out of the 'stuck' sickness state incredibly different and starts to affect every bodily system.
The way to think about it is this: Say you decide to save/borrow/raise money and pay for HBOT or stem cells or plasmapheresis. It might help and for some it does but for MOST we are probably putting the fancy intervention in before we get all the foundational pieces normalized and optimized and so it is likely to fail (or more probably, work for a while but might be unlikely to take hold).
Before we jump into thinking about "disease modifying interventions" we need to deal with basic biochemistry: electrolytes, minerals, nutrition, microbiome.
While the BIG 4 foundational fixes (electrolytes, minerals, nutrients, microbiome) will be unlikely to CURE you (in and of themselves) - without getting these right most additional interventions will fail to lead to the outcomes we hope for (IMO).
Does this make sense?
The immunology of sickness metabolism (2024, link in comments)
Aimee Jones retweeted
Contrary to popular belief, the hallmark symptom of #MECFS is not fatigue, but rather post exertional malaise. PEM, or a crash, can occur at any time , after any sort of physical, emotional, or mental exertion. Many people with #MECFS describe PEM as their most limiting symptom. This is the fifth video in a ten part video series by #NotJustFatigue
Aimee Jones retweeted
So....I wrote a thing 👇
Thank you @MrTopple
@h_sharland and @TheCanaryUK for tge opportunity and your support.
'A decade of advocacy fighting for ME/CFS has left me angry and frustrated' thecanary.co/opinion/2024/07…
#pwME #MEcfs





























