#cfsme

the official medicine take on CFS/ME is there is no treatment - but there is

CONVALESCENT OFFLOADING

this isn't a cure but it is a treatment

and it is only available to people with money and or people who will do unpaid labour for them

What would it look like (first thoughts):

An income to do less - on prescription - not something you have to expend more energy on obtaining than it restores

Personal Assistance - someone you can delegate to, like writing correspondence, to working stuff out and planning - basically to offload thinking energy so you can reserve that for autonomy and choice

Food - a meal service, nutrition really matters for CFS/ME but you have to eat what you can get

OT which includes the solution - like if you need a wheelchair it comes with getting that sorted - if you need to learn progressive muscle relaxation it comes with someone to teach you.

with CFS/ME you are beyond self care - like that is the point - you have gone well beyond your personal resources for way too long - SO simply REPLACE THE FUCKING RESOURCES

I live within UK NHS but I don't know a country that does this.

Before the age of antibiotics and big pharma breakthroughs people in similar situations to CFS/ME were a regular part of 'normal' nursing. TB for example, people who had survived serious illness (and maybe had what we now call CFS or post viral fatigue) was expected. Of course money and familial support mattered in what care you got but it wasn't EXPECTED that medicine could treat the everyday unfortunate consequences of Ruined Health - you were not part of this weird and stigmatised 'if nobody can medically™️ fix it maybe it isn't even real' 'god these people are so pathetic they can't even get a proper Condition'

And it would not even need to be ideal - because any load off is less chance of PEM and less chance of PEM means more chance of a stable or increasingly positive baseline

Does anyone have any specific things that they'd like to see in a journal/diary? So far I have:

Page 1, traditional diary

6 spaces, one for each day of the week, sat/sun sharing a space

Page 2, energy tracker

Hourly activity tracker

Projected energy expenditure column

Actual energy expenditure column

Daily notes

Misc pages

Yearly and/or monthly planner pages

My brain and body are deteriorating so rapidly and I can feel how bad it's getting in real time.

I feel like I have an icepick up my brain stem, my bones are loose and unstable, my skin is breaking, I can't keep heat, I can barely eat anything even though I'm extremely hungry and losing size, I'm breathing shallow. The body pain is an 8 and it's still not severe enough to compare to this.

My cognitive function is just... gone atp. I don't think anymore. I can't even play games half the time. I can't hold onto sentences, just concepts and only sometimes. I have no idea how to explain things anymore except during these bursts which lead to a worse crash 5 mins later

Genuinely I wish they would diagnose me with cancer or something. Something they'd give me drugs for and that would get me comforted and taken care of in death.

Every cell in my body is holding on for dear life right now. There is no energy left to use and there is less and less of me to eat away at to survive. I can feel my body doing everything to protect itself but I can't fucking explain it other than "I might die soon"

It's like a premonition. It's genuinely what I believe. I am not going to last much longer. This disease is going to fucking kill me

I slightly edited one of the charity's template emails to MPs to make it a bit more spammable and am posting it below in case it helps anyone.

Please note: I hate the term CFS with a passion but have added it in for my own reasons- others are obviously welcome to do as they think best!

Hi there, I'd really appreciate if you could use the email template below to lobby your MP on people with Very Severe ME/CFS. If you have a smartphone, it should take no more than a few minutes! Many thanks to those that have time. X

Subject: Request for Support Regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Body: Dear [MP's name],

My name is _____ and I am one of your constituents. My postcode is [insert postcode]. I am writing to draw your attention to this critical matter (. / and on behalf of my (whatever) who has had ME/CFS for _ years (/many years). / and I have had ME/ CFS for _ years].

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a complex, debilitating, and chronic disease affecting over 700,000 people in the UK. ME causes profound neurological, immunological and metabolic dysfunction. In the UK there is no NHS service for the very sickest people with ME/CFS.

It is estimated that up to 175,000 people are suffering at home or in hospital, bedbound, tube fed and paralysed, with no specialist service to call on. The DHSC ME/CFS Delivery Plan promised to start the process of commissioning a service for the very severely ill ME/CFS sufferer in England.

The start of this process has now been pushed back until April 2027 at the earliest while the very frail are left with no service, no specialists and nowhere to go.

[If possible add personal or local information that will help illustrate the issues you are concerned about. Make it as personal as you are comfortable with. Sufferers sharing this with friends and fam might consider pre-writing a couple of sentences about themselves and their experiences that their associates can choose to include or perhaps delete this section to avoid people getting stuck on this bit.]

I am not able/ too ill to come to your surgery to discuss this matter in person so I ask that you view the short video attached here (https://youtu.be/YoCT_K66Ul0?is=h9ffQa7BqjJwduVZ ) and respond to me by email (/other.)

(My ( ‘s) situation/The video linked above) illustrates how urgent the case for healthcare is for the very sickest people with ME/CFS who have the least help. The decision to set up this service lies with the Secretary of State for Health and Social Care. Please lobby him and represent how urgent the situation is for those of us who are too ill to campaign on our own behalf.

(If you live in England you can ask your MP to contact your local IntegratedCare Board:)

Setting up a specialised service for the very severely ill with ME/CFS will take years. You can help relieve suffering now by lobbying our Integrated Care Board (ICB) and ask for the immediate setting up of a virtual ward system and inclusion in their Joint Forward Plan: https://www.england.nhs.uk/contact-us/about-nhs-services/contact-your-local-integrated-care-board-icb/

A virtual ward allows patients to receive acute, hospital-level care in their own homes, care homes, or hospices rather than a hospital bed. It uses technology—such as apps, wearables, and monitoring devices—combined with regular, multidisciplinary team visits (nurses, doctors, therapists) to monitor conditions, prescribe medication, and provide treatments like oxygen and fluids.

Thank you for your attention,

[Your Name]