People who are severely or very severely affected by ME/CFS often struggle to initiate let alone complete normal everyday activities because of the overwhelming intensity of their condition and the functional impairment it brings. This means family – if available – must become their lifeline providing daily care often in the absence of any support from social care services…
These are just a few of the stories and comments that we have chosen to feature on the website this week. We'd like all the brave warriors who are battling severe and very severe ME/CFS – and the wonderful people who care for them – to know that you are not alone in this fight.
There is a wealth of experience and support available in the patient and carer community, and the ME Association is doing all that it can to make health and social care and disability benefits more accessible to anyone in need.
We might not have an effective treatment yet, but we are committed to working with the NHS and social care services to implement the 2021 NICE Clinical Guideline's recommendations and with the Department of Health and Social Care and its' working groups, to improve research investment and healthcare provision as quickly as possible especially for the those who are the most affected and often the most neglected.
If you would like to share your story, whether it be about your current or recent experience of severe and very severe ME/CFS as a patient or as a carer, or perhaps as someone who has experienced improvement and can reflect on where they are now, then do please get in touch: Feedback@meassociation.org.uk
“Until you’ve had severe ME, I don’t think it’s possible to convey or relate to how utterly disabling and far reaching its effects are. By comparison, mild and moderate ME is a completely different condition. Equally, very severe ME is different again and in unimaginable ways.
“I’ve never had to be tube-fed or hospitalised. I’ve been close, but never crossed that line. I cannot speak for those who’ve been worse than I have, but I have such a deep compassion for their plight. I still don’t know how I got through some days and nights without dying. And I don’t say this lightly. There comes a point where symptoms are so severe that it seems quite impossible to survive.
– Severe ME can vary from bedridden to “just” housebound. That could be from 10 steps a day up to 2,500 steps a day. This is a huge difference! And this would be baseline, consistent, daily limits, as opposed to the push-crash cycle where some PwME (People with ME) will go shopping one day, then have a day in bed to recuperate. That’s not severe ME, that’s just poor Pacing, in my opinion.
– Severe ME strips away choices. It strips away basics, things others take for granted. Severe ME means not being able to choose to go shopping and then crash. Severe ME means you simply can’t even summon the energy to lift your limbs or make that journey. It’s very hard to convey unless you experience it.
“You’re faced with some undesirable “or” situations. I can either go to the toilet or eat a little food, for example. There’s not enough energy available to do both. And it’s not like you’re getting energy from the food as that just doesn’t happen in the same way as it does in a healthy person.
“Symptomatically, it can be the difference between being unable to speak, eat, swallow, blink, breathe properly, communicate, tolerate sound, touch, scent etc. compared to perhaps being able to sit in a chair most of the day and tolerate distractions such as television, company, light, sound etc.
“Each person’s experience of severe ME will be different. Physical, cognitive, pain, environmental or other stressors will impact each person in a unique way. Some can chat and socialise more but can physically do nothing else. Others might be able to get some simple meals prepared and yet not be able to string a sentence together or think clearly. For some, the pain is so overwhelming, that they can do nothing else but try and tolerate it. Some are trapped in situations that are perpetuating the fight or flight or freeze response and simply can’t escape.
“A crash is a temporary state that all PwME will be familiar with, but severe ME is worse than the worst crash and is consistent, daily, with no let up, no relief, no way out, no day off, not even an hour or a minute of respite.
“Sleep may only come a few seconds at a time and be completely unrefreshing, but enough to maintain basic life function at a cost. The cost is that the body will ravage itself in order to stay alive. Adrenaline will be kicking in almost constantly in a bid to keep the brain and heart functioning. Everything else falls by the wayside. Life takes on a completely different meaning. You just want the suffering to come to an end.
“But there are also things that some people with severe ME (PwSME) may have, that those with less severe forms may lack. They have learned acceptance. They have already grieved for their losses. There’s no push-crash cycle, as everything has already been taken away for such a long time. They know they can do little more than lie in their torture-chamber of an existence. Their misery index is surprisingly low. They’re resigned to waiting, to hoping, to just getting through one day to the next. It’s a state that may be completely unique to PwSME. I see it and I’ve lived it.
“People with less severe ME need to understand and appreciate that if they keep pushing through, keep ignoring their symptoms, keep exceeding their limits and don’t start living inside their ‘energy envelope’ that one day their choices may also be taken away from them. Whilst it’s not inevitable, it most certainly is possible.
“There needs to be better education, more shared knowledge, better Pacing methods – such as using Heart Rate Variability or Heart Rate Monitoring – that may prevent severe ME occurring in pre-existing mild or moderate ME. But even this isn’t definitive. Some PwME may have a severe and sudden crash and don’t even have the opportunity to take corrective action. Personally, I had no choice when I first got ME, I couldn’t even sit on a chair, so I had no choice but to be bed-ridden.
“The impact on normal life is so vast, so all consuming, a list would be infinite, so to summarise loosely:
– There’s no normalcy.
– There’s no social life.
– There’s no getting on with things and resting afterward.
– There’s no attending the doctor’s surgery as needed.
– There’s little to no self-care possible.
– There’s no dignity.
– There’s no independence (you’re reliant on others for everything).
– There are no choices nor freedom to choose.
– There’s no medication or treatment that makes sufficient difference.
– There’s a “catch-22” situation, where the more severe you are, the more attention you need to pay to everything, but the energy required doesn’t exist, yet it’s needed to slow or stop the downward spiral.
“I lost my job. I lost my business. My favourite hobbies and interests had to cease overnight. I lost everything I was. I couldn’t be an effective wife, daughter, sister, friend or guardian/carer for our pets. I was tortured by various processes that should be there to fall back on but actually just increased the demands on my body – having to communicate in great detail how things had changed.
“I experienced demanding appointments and testing that effectively led nowhere. I was locked inside a shell that was too weak to protect me but too strong to escape from.”
Featured Image Caption: ‘Existing in the darkness' (self captioned by Kathryn)