{"id":39178,"date":"2023-05-10T15:50:41","date_gmt":"2023-05-10T14:50:41","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=39178"},"modified":"2023-05-11T13:52:11","modified_gmt":"2023-05-11T12:52:11","slug":"pem-running-out-of-battery-feeling-intensely-unwell-a-carers-perspective","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/pem-running-out-of-battery-feeling-intensely-unwell-a-carers-perspective\/","title":{"rendered":"PEM: Running out of battery & feeling intensely unwell: a carer’s perspective"},"content":{"rendered":"

PEM: Running out of battery & feeling intensely unwell: a carer’s perspective<\/strong><\/h2>\n

 <\/p>\n

I guess you\u2019ve probably heard of Myalgic Encephalomyelitis – by its abbreviation \u2018ME\u2019.<\/p>\n

\"\"Maybe you\u2019ve got an idea that it\u2019s about being tired all the time. That would be understandable because some people call it Chronic Fatigue Syndrome (\u2018CFS\u2019 for short), a name that is despised by most of us who find it so understates and misrepresents our lived experience of the illness.<\/p>\n

Actually, I consider it an insult, but NICE, the UK\u2019s National Institute for Health and Care Excellence, has hit on a compromise by calling it ME\/CFS, so that\u2019s what I\u2019ll do here.<\/p>\n

Fatigue<\/strong><\/h2>\n

Sure, \u2018fatigue\u2019 is essential to the diagnosis, but not the kind with which most of us are familiar.\u00a0It is physical and mental, all consuming, overwhelming, and you can\u2019t sleep it off.<\/p>\n

Patients say things like:<\/p>\n

\u201cI feel like I\u2019ve been hit by a bus!…. like everything\u2019s been sucked out of me\u2026.<\/p>\n

\u2026as if \u00a0I\u2019ve just come round after being knocked out in a boxing match\u2026\u201d<\/p>\n

But there\u2019s a problem with this emphasis on \u2018fatigue\u2019 alone, because there\u2019s much more to ME\/CFS than that. ME\/CFS is a multi-system illness with multi symptoms to match. Four are needed for a diagnosis in the UK: fatigue; PEM; sleep disturbance; cognitive difficulties. Many more can be experienced.<\/p>\n

Post Exertional Malaise – the hallmark feature<\/strong><\/h2>\n

The \u2018hallmark\u2019 or \u2018cardinal\u2019 clinical feature of ME\/CFS is Post-Exertional Malaise (PEM). NICE describes PEM as:<\/p>\n

the worsening of symptoms after an activity which is \u201cdisproportionate to the activity\u201d (i.e. much worse than you\u2019d expect) \u2026<\/p>\n

\u201coften delayed in onset by hours or days\u201d, and \u201chas a prolonged recovery time that may last hours, days, weeks or longer\u201d (NG206).<\/p>\n

\"\"Some prefer the term Post-Exertional Symptom Exacerbation<\/strong> (PESE) , since, as well as an all-pervading and intense feeling of unwellness (\u2018malaise\u2019), all the person\u2019s symptoms can intensify.<\/p>\n

When we mention \u2018activity\u2019 and \u2018exertion\u2019 here, we\u2019re not talking about running a 10K or climbing Yr Wyddfa, and it doesn\u2019t have to be physical; it could be cognitive or emotional, or a combination.<\/p>\n

Activity can be anything<\/span><\/strong><\/h3>\n

All the examples I give about the triggers and experiences of PEM are based on our family\u2019s lived experience of ME\/CFS. For someone with severe ME\/CFS, an \u2018activity\u2019 could be brushing their teeth – and having to decide whether to do this \u2018activity\u2019 today or wash their face, because they can\u2019t manage both.<\/p>\n

It might mean, once a week being helped from their bed into the wheelchair and being pushed to the back door to spend 5 minutes feeling the fresh air, wearing ear defenders and an eye mask – but then having to rest quietly without talking for the rest of the day in their darkened, sound suppressed room in the bed where they\u2019ve spent the past 3 years.<\/p>\n

Pushing beyond these tiny limits can induce a worsening of all their symptoms \u2013 that is Post-Exertional Malaise.<\/p>\n

ME, the disease where pushing harder can make you sicker<\/strong><\/p><\/blockquote>\n

What PEM feels like<\/strong><\/h3>\n

When people with ME\/CFS try to describe PEM they often say<\/p>\n

\u201cI feel like I\u2019ve been poisoned\u201d.<\/p>\n

They talk about an awful heaviness:\u00a0 <\/strong><\/p>\n

\"\"\u201cI feel like I\u2019ve got heavy weights attached to my body\u2026
\nlike I\u2019ve got liquid lead running through my veins instead of blood\u2026
\nas if I\u2019m an alien who\u2019s landed from another planet which has less gravity\u2026”<\/p>\n

“I feel that I can\u2019t support my body, even when I\u2019m lying down.”<\/p>\n

Body pain increases and other disturbing sensations: <\/strong><\/p>\n

\u201cI get a lot of different sorts of pains, all over my body – sometimes in my limbs, my hands and feet… and burning sensations – sometimes my whole body is hurting\u2026 I get pain in my face and a real weakness, a heavy feeling, in my jaw and cheeks.”<\/p>\n

“It makes me open my mouth because I haven\u2019t got enough energy to keep it shut – and my tongue\u2026 I mean, you\u2019re not usually aware of it\u2026 but I become aware of it\u2026 how weak it is\u2026”<\/p>\n

“During the night I wake up with vertigo and coloured flashing lights going off behind my eyes. When that happens I have to keep the light on and my eyes open until I can fall asleep again\u201d.<\/p>\n

Physical coordination and speech can be affected:<\/strong><\/p>\n

\"\"\u201cOne day, someone actually asked me if I was drunk, because as I get worse, my speech becomes impaired and I lose my balance and bump into things\u2026<\/p>\n

“When I was in the hairdressers recently, the hairdresser had to keep straightening me, pushing me upright – because it\u2019s hard to sit up for a long time and I was tilting to one side!”<\/p>\n

“I can only keep up with a conversation for a short time, then I start to lose track and get more and more confused\u2026\u201d<\/p>\n

People with severe ME\/CFS can become reliant on a wheelchair<\/strong>, or be confined to bed, lose the ability to speak, eat and drink:<\/p>\n

\u201cWe had a list of things like \u2018Do you want a wee?… a drink?… the window open? And he would squeeze my finger when we got to the right one. Sometimes he could whisper a few words and we would try to piece together their meaning\u2026 He was fed by naso-gastric tube in a hospital bed for 18 months\u201d.<\/p>\n

Cognitive and sensory symptoms increase:<\/strong><\/p>\n

\u201cI can\u2019t look at a screen especially if there\u2019s much movement, and I have to stop trying to read\u2026 I can\u2019t focus my eyes, and have to keep looking away\u2026 it\u2019s like I\u2019ve become dyslexic\u2026 and I can\u2019t get any meaning from the text\u2026<\/p>\n

If I push myself to keep going, it starts to affect me all over\u2026 I get pains in my arms and legs which is crazy because what have they got to with reading?! I become more and more sensitive to light and sounds…\u201d<\/p>\n

Dysautonomia is common:<\/strong><\/p>\n

\u201cPain in my heart is often an indicator that I\u2019ve done too much\u2026I get palpitations\u2026 missing beats\u2026 dizziness and a feeling of near collapse \u2013 I\u2019ve had this a lot when standing up to do something, like doing the washing up \u2013 and a feeling of not being able to get enough oxygen (this is nothing to do with anxiety, by the way)\u2026\u201d<\/p>\n

PEM stops you functioning:<\/strong><\/p>\n

\"\" \u201cMy whole body just feels like its slowing down, like it\u2019s running out of battery\u2026 and the more I try to push against that, the worse my symptoms become\u2026<\/p>\n

The only thing I can do is to stop\u2026 my body isn\u2019t working, my brain isn\u2019t working\u2026 I try to resist going to bed because I want to do stuff, but I just have to stop and rest\u201d<\/p>\n

\u201cFor most people \u2018resting\u2019 could men sitting down and watching telly, or reading a book, but that\u2019s \u2018activity\u2019 for me and would make things worse when I\u2019m getting PEM\u2026 I have to stop completely and lie in the dark\u2026<\/p>\n

I\u2019ve had to learn how to do \u2018deep rest\u2019\u2026 this means making my mind completely blank\u2026 I can\u2019t think, imagine or bring things to mind, because even this will make me worse\u2026\u201d<\/p>\n

Post-Exertional Malaise is the most debilitating feature of ME\/CFS, because it stops people from doing the things they want to do: being able to study, hold down a job, enjoy leisure and social activities that most of us take for granted, look after their families or, in the most severe cases, undertake their own personal care.<\/p>\n

\n

ME\/CFS takes away people\u2019s lives<\/strong><\/p>\n<\/blockquote>\n

A desperate need for research<\/strong><\/h2>\n

Because of a historic lack of biomedical research, there are, as yet, no effective treatments. In 2009<\/a>, US Prof Dr Nancy Klimas<\/a> drew this stark contrast:<\/p>\n

“My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested.<\/p>\n

Many of my ME\/CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.<\/p>\n

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses, I would rather have HIV.”<\/p>\n

Take part in ground-breaking research<\/strong><\/h2>\n
\"\"

DecodeME will use small differences in the DNA of people with ME\/CFS to look for biological causes of the disease.<\/p><\/div>\n

If you, or a family member, or a friend, have been diagnosed with ME\/CFS\u00a0 (there were an estimated 13,000 in Wales before long COVID), please join the world\u2019s largest research study into the genetics of this illness, Decode ME. Edinburgh University has been awarded \u00a33.2m to analyse the genetic samples of 25,000 patients. Healthy people also needed. It\u2019s easy to take part from home.<\/p>\n

Find out more:<\/strong>\u00a0https:\/\/www.decodeme.org.uk\/<\/a><\/p>\n

And, if you live in Wales, please check out the WAMES website and get in touch https:\/\/wames.org.uk\/<\/a><\/p>\n

Rob, parent \/ carer<\/strong><\/p>\n

Find out more<\/strong> about World ME Day and PEM<\/a><\/p>\n

#WorldMEday\u00a0 \u00a0 #LearnFromME\u00a0 \u00a0#MyalgicE\u00a0 #DecodeME<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

PEM: Running out of battery & feeling intensely unwell: a carer’s perspective   I guess you\u2019ve probably heard of Myalgic Encephalomyelitis – by its abbreviation \u2018ME\u2019. Maybe you\u2019ve got an idea that it\u2019s about being tired all the time. That … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":39247,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[7226,7228,7545,5970,584,7206,7207,585,1927,7225],"class_list":["post-39178","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-learnfromme","tag-worldmeday","tag-carer","tag-decodeme-study","tag-pem","tag-pese","tag-post-exertional-symptom-exacerbation","tag-post-exertional-malaise","tag-symptoms","tag-world-me-day"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2023\/05\/Battery-low.jpg?fit=598%2C317&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-abU","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/39178","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=39178"}],"version-history":[{"count":10,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/39178\/revisions"}],"predecessor-version":[{"id":39248,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/39178\/revisions\/39248"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media\/39247"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=39178"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=39178"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=39178"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}