#ME/CFS exercise approach

[compassionmattersmost]

4: Sitting in the Gym Parking Lot: A Gentle Step Toward Physical Movement

For many people living with Post-Viral ME/CFS, even the thought of physical exercise can feel overwhelming. The body is a delicate balance, and pushing it beyond its limits can trigger post-exertional malaise (PEM)—that all-too-familiar crash after exertion that leaves you feeling more fatigued and symptomatic than before. Yet, there may still be a desire, a pull to move your body, to regain some…

[transmutationisms]

I've had doctors Google my condition, get mad that all official guidance and evidence advises them against how they want to treat it, and then decide actually their discredited approach to treatment is better anyways ☠️

ME/CFS specialists prescribing graded exercise therapy while their web browser is fullscreen on their giant desktop computer showing 57 detailed up to date debunks of the PACE trial and one ass-kissing press release summary of it written by the NHS:

[myalgicencephalomyelitiscfstom]

Fascinating long Covid research study from the Netherlands published in early January. Image is from Guardian article: "Long Covid causes changes in body that make exercise debilitating – study. Experts say severe muscle damage, mitochondrial problems and microclots may explain impact of working out"

Full research paper can be read here: "Muscle abnormalities worsen after post-exertional malaise in long COVID"

"This study highlights novel pathways that help to understand the pathophysiology of post-exertional malaise in patients suffering from long COVID and other post-infectious diseases."

Press release:

Discussion thread on the Science for ME forum

Twitter thread by corresponding author:

Includes: "We are now seeing if something similar happens in patients with ME, and hope to include muscle biopsies from patients with severe ME as well in the near future"

"This collaboration between @amsterdamumc, @VUamsterdam , @VU_FGB, and @AMSmovement would not have been possible without the help of so many students, colleagues, and private funders. We also acknowledge the contribution of @PlzSolveCFS , Patient-Led Research Collaborative , and @ZonMw for future work! 2/m"

"Professor Steve Griffin, of Leeds University, said the study suggests “the approach to treating conditions such as long Covid, ME and CFS [myalgic encephalomyelitis and chronic fatigue syndrome] using graded exercise regimens is entirely flawed. Moreover, it appears that over-exercising under these circumstances is actually directly damaging”."

[anumberofhobbies]

I wonder what the status of this from last year is now?

To see if WASF3 dysfunction might be involved in ME/CFS, the team compared muscle tissue samples taken from 14 people with ME/CFS to samples from 10 healthy volunteers. They found substantially higher levels of WASF3 in most of the people with ME/CFS. This dysfunctional increase in WASF3 seemed to be linked to impairment of a cellular signaling pathway called the ER stress pathway. When the team treated human muscle cells with a compound known to increase ER stress, they saw a corresponding harmful increase in WASF3. The researchers treated cells from the initial study participant with an experimental drug, called salubrinal, known to reduce ER stress. After this treatment, WASF3 levels decreased in the cells, more mitochondrial energy complexes formed, and energy production improved. “We hope to embark on clinical studies to investigate whether this type of strategy can also work in patients to improve energy levels,” Hwang says. Mitochondrial dysfunction has been found in some people with Long COVID and other conditions that include fatigue. More research is needed to understand whether targeting ER stress may also be a promising approach for these conditions.

[spiritualdirections]

St. Jerome, the model interpreter of Scripture

From  Scripturae Sacrae Affectus,Pope Francis' Apostolic Letter on St. Jerome:

‘Biblical passages are not always immediately accessible. As Isaiah said (29:11), even for those who know how to “read” – that is, those who have had a sufficient intellectual training – the sacred book appears “sealed”, hermetically closed to interpretation. A witness is needed to intervene and provide the key to its liberating message, which is Christ the Lord. He alone is able to break the seal and open the book (cf. Rev 5:1-10) and in this way unveil its wondrous outpouring of grace (Lk 4:17-21). Many, even among practising Christians, say openly that they are not able to read it (cf. Is 29:12), not because of illiteracy, but because they are unprepared for the biblical language, its modes of expression and its ancient cultural traditions. As a result the biblical text becomes indecipherable, as if it were written in an unknown alphabet and an esoteric tongue.

‘This shows the need for the mediation of an interpreter, who can exercise a “diaconal” function on behalf of the person who cannot understand the meaning of the prophetic message. Here we think of the deacon Philip, sent by the Lord to approach the chariot of the eunuch who was reading a passage from Isaiah (53:7-8), without being able to unlock its meaning. “Do you understand what you are reading?” asked Philip, and the eunuch replied: “How can I, unless someone guides me?” (Acts 8:30-31).[32]

‘Jerome can serve as our guide because, like Philip (cf. Acts 8:35), he leads every reader to the mystery of Jesus, while responsibly and systematically providing the exegetical and cultural information needed for a correct and fruitful reading of the Scriptures.[33] In an integrated and skilful way he employed all the methodological resources available in his day – competence in the languages in which the word of God was handed down, careful analysis and examination of manuscripts, detailed archeological research, as well as knowledge of the history of interpretation – in order to point to a correct understanding of the inspired Scriptures.

‘This outstanding aspect of the activity of Saint Jerome is also of great importance for the Church in our own time. If, as Dei Verbum teaches, the Bible constitutes as it were “the soul of sacred theology”[34] and the spiritual support of the Christian life,[35] the interpretation of the Bible must necessarily be accompanied by specific skills."

[purplesaline]

MANY people with fibromyalgia are actually on the hypermobility spectrum, which includes hypermobile ehlers danlos syndrome.

What your sister is experiencing sounds like a very classic presentation of hEDS to me, especially the yoga helping right up until it makes things worse.

See, with hEDS our collagen is all fucked up and one way we can help manage the pain is to strengthen the muscles around our joints, but if one muscle is strengthened too much then suddenly we're experiencing pain again because now it's doing more than it's fair share. Think of it like our muscles are lazy and want to avoid doing work if another one is stronger, so it's really important to keep our muscles in balance. This is also why compound exercises (exercises that target multiple muscle groups) risks causing pain. One of the groups will do more than their fair share of the work work which puts too much strain on that part of the body, especially if there's a joint there.

One quick way to see if hEDS is a possible diagnosis worth following up on is by checking yourself on the Beighton Scoring system.

If ar any point in your life any of that was common for you then it's worth doing more reading on the subject.

Unfortunately there is no treatment other than pain management, which is the same treatment as you get with a fibromyalgia diagnosis, but some folks find it useful because physical therapy should be approached differently for hypermobile folks, and we tend to require more anaesthesia and it wears off more quickly.

The other common diagnosis that folks in the fibromyalgia category often find themselves with is a CF/ME (chronic fatigue/myalgic encephalomyelitis), though it's also not unlikely folks will have both. It doesn't sound like your sister fits the CF/ME criteria based on what you've mentioned but that was just a very limited snapshot. Plus other folks reading this may find the info helpful.

Hypermobility is also very, very inheritable so chances are you're on the spectrum as well, and it just presents differently or doesn't present as severely for you. It's worth looking into so you can start taking action to avoid pain later in life!

My sister rang me today.

Ever since she was six, she's had pain in her legs, which turns into pain in her hips and back for stretches of time. She's tried for years to get a diagnosis, with absolutely no joy. As a kid they thought she had collapsed arches in her feet; then it became clear her feet were fine, but something was wrong with her tendons; and then in her 20s they just shrugged it off with a "We'll never know probably" and that was that. She keeps on top of it with daily yoga, generally, though flare ups happen periodically. If she has to pause the yoga for some reason, she fairly rapidly regresses. Currently she has plantar fascitis again, which has halted everything once more, so right now she's back into a pain slump.

Anyway, she called me today while going from Doctors to pharmacy to get the codeine they've prescribed her for it.

"I think one of my yoga moves to help the fascitis might have exacerbated the legs," she said. "Trouble is, there's never been a diagnosis. I just have to trial and error what might help."

... And I had one of those lightbulb moments, you know? My brain suddenly went "Wait hang on, this is very familiar isn't it?" and rang the bells of memory.

"Did they ever test you for fibromyalgia?" I said.

They had not. It's never been suggested, even. My sister said she'd look up the symptoms and see if it chimed, and rang off.

Fifteen minutes later, she calls back.

Turns out she got to the pharmacy and gave them the prescription. While waiting, she googled fibromyalgia symptoms and found the NHS website.

"It was like someone had written a profile of me," she tells me on the phone. "Like, spookily, scarily accurate to me, right down to the temperature regulation bit. It felt like a practical joke."

And of course, as she stood there in the pharmacy, suddenly staring at the age of forty at the apparent answer she's been trying to get since she was six years old, she burst into tears.

"Oh no!" Said the pharmacist, hurdling the counter in a single leap and scattering the queue (I am exaggerating for humorous affectation.) "Quickly! Come into our little exam room, we'll get you tissues and water!"

My sister was duly ensconced into a Safe Place, and encouraged to cry it out. It took several hiccuping minutes, but finally, she managed to calm down and get back to an Extremely Watery Smile.

"Do you want to talk about it?" the pharmacist asked sympathetically.

"It's just..." my sister said, overwhelmed and searching for words. "My whole life I've been in pain, and they've never found why..."

"Ah," said the pharmacist thoughtfully. "Have you explored fibromyalgia?"

...

"TWICE IN ONE DAY," my sister yells on the phone to me later. "HOW THE HELL HAVE TWO SEPARATE PEOPLE ON THE SAME DAY FINALLY GIVEN ME THE ANSWER, AND NEITHER OF YOU IS A DOCTOR"

Anyway she has a doctor's appointment for tomorrow to discuss it, so we'll see

[aposbook-12]

How to reduce fatigue and boost energy naturally

What is Chronic Fatigue

Chronic fatigue is a condition characterized by persistent, long-term fatigue that is not relieved by rest and cannot be explained by any underlying medical condition. While medical evaluation is essential, natural cures for fatigue can also play a role in managing fatigue. Reducing stress levels, finding the right work-life balance, improving your diet, and resting properly are some effective ways to combat fatigue naturally.

Chronic Fatigue Causes

Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is a complex condition. Its causes are not fully understood yet and can be due to a single reason sometimes, or alternatively, can be the result of a combination of factors leading to fatigue. 

Some of the possible causes of chronic fatigue might include:

- Viral infections: Some research suggests that CFS may be triggered by a viral infection, such as Epstein-Barr virus (EBV), human herpes virus-6 (HHV-6), or Coxsackie B virus.

- Immune system dysfunction: CFS may be related to an abnormal response of the immune system, leading to inflammation and cellular stress.

- Hormonal imbalances: Disruptions in the levels of hormones such as cortisol and thyroid hormones can cause fatigue.

- Nutrient deficiencies: Lack of essential vitamins and minerals can cause fatigue.

- Psychological stress: Chronic stress can cause fatigue.

- Sleep disorders: Sleep disorders such as insomnia can lead to fatigue.

- Other medical conditions: Some medical conditions such as anemia, diabetes, and thyroid disorders can cause fatigue.

It's always recommended to consult with a doctor to determine the underlying cause of your chronic fatigue in order to develop an appropriate treatment plan.

Natural Treatments for Chronic Fatigue

There can be several treatments to reduce fatigue and boost energy. Below is a list of some of the most common ones.

You can also click on natural treatments for fatigue to find a detailed list of all the natural solutions, including various natural therapies, diet programs, alternative medicine, vitamins, supplements, herbal medicine, and home remedies. 

You can also go to www.aposbook.com to find all natural treatments for any medical condition IN ONE CLICK.

Natura solutions to reduce fatigue might include:

Diet and Nutrition:

Balanced Diet: Consuming a well-balanced diet is crucial. Focus on whole foods such as fruits, vegetables, whole grains, lean proteins, and healthy fats. Avoid processed foods, excessive caffeine, and sugary snacks.

Essential Nutrients: Ensure adequate intake of essential vitamins and minerals. Vitamin B12, iron, and magnesium play a key role in energy production and overall health.

Exercise:

Gradual Approach: Regular exercise can improve energy levels, reduce stress, and enhance sleep quality. Start with light exercises and gradually increase intensity and duration.

Low-Impact Options: Consider activities like walking, swimming, or gentle yoga.

Sleep Hygiene:

Consistent Sleep Schedule: Establish a regular sleep routine. Go to bed and wake up at the same time each day.

Create a Relaxing Environment: Keep your bedroom dark, quiet, and cool. Avoid screens before bedtime.

Stress Management:

Mindfulness Techniques: Practice meditation, deep breathing, or progressive muscle relaxation to manage stress.

Yoga and Tai Chi: These mind-body practices can help reduce stress and improve overall well-being.

Herbs and Supplements:

Ginseng: Ginseng is believed to boost energy and enhance vitality.

Ashwagandha: An adaptogenic herb that may help reduce fatigue and improve resilience to stress.

Rhodiola: Known for its potential to increase stamina and combat fatigue.

Co-enzyme Q10: A supplement that supports cellular energy production.

Magnesium: Essential for muscle function and energy metabolism.

Acupuncture:

Alternative Therapy: Acupuncture involves inserting thin needles into specific points on the body. Some people find it helpful for reducing fatigue and promoting overall wellness.

[compassionmattersmost]

9: Listening to Your Body: A Compassionate Approach to the Leg Press for Post-Viral ME/CFS

When living with Post-Viral ME/CFS, it’s essential to remind ourselves that our journey with exercise is not measured by how much we do, but by how gently we honor the unique rhythms of our bodies. This is especially true when it comes to engaging in physical activities like the Leg Press Machine. Today, we’ll explore how to mindfully approach this exercise in a way that supports both your…

[donjuaninhell]

George Monbiot with a very good primer on the history of the psychologisation of ME/CFS, on the UK side of the Atlantic anyway.

This was a story that found me. In 2021, after writing about long Covid, I was accused by the psychiatrist Prof Michael Sharpe of spreading it. Apparently, you could induce such illnesses by discussing them. Investigating further, I was astonished by the failure in his presentation to support his claim with evidence, and perturbed by his lack of satisfactory answers to my questions. Sharpe takes a similarly “biopsychosocial” approach to ME/CFS, one which at the time of his long Covid presentation still dominated medical practice in the UK.

You can trace the origins of this model to a paper published in 1970. Without assessing a single patient or interviewing a single doctor, it blamed an earlier outbreak of post-viral ME/CFS on “mass hysteria” based on case notes alone. The reasoning included the fact that the outbreak affected more women than men. For centuries, doctors have been readier to classify women’s illnesses as hysterical or psychosomatic than they have men’s. ME/CFS, like long Covid, hits women harder, so, the thinking goes, it must be all in the mind.

Freedom of information requests to the National Archives show how the biopsychosocial model became embedded in research practice and government policy. The minutes of a meeting on government benefits policy in 1993 give a sense of the position of the psychiatrist Simon Wessely at the time. As summarised in the minutes, he told the meeting that ME/CFS is “not a neurological disorder”. He reportedly claimed that apparently severe cases were likely to result from either a “misdiagnosed psychiatric disorder or poor illness management”, while many cases were “iatrogenic”: caused by medical examination or treatment. His views were apparently that “the worst thing to do is to tell them to rest”, “exercise is good for these patients”, “most cases can be expected to improve with time” and, perhaps most shockingly, “benefits can often make patients worse”.

[...]

The believers were championed by the Science Media Centre, of which (now Professor Sir) Simon Wessely was a founder member. Some of the media’s reporting, influenced by the centre, portrayed ME/CFS patients as abusive, threatening, workshy and resistant to treatment.

As the doctrine spread through the medical profession, some practitioners adopted the same attitudes. A paper promoting psychological treatments lamented the “difficult challenge of … managing patients’ resistance to the treatment”, which arose from “lack of acceptance as to the rationale”. Nurses observed that “the patient should be grateful and follow your advice [but] the patient is quite resistant and there is this thing like you know, ‘The bastards don’t want to get better’.”

On the note of the SMC, I got to introduce Monbiot to a baffling statement made by the director of the Science Media Centre, Fiona Fox, which suggested that belief in the Revolutionary Communist Party could successfully inoculate one against ME/CFS.

[universal-shapers]

The Role of Cortical Release in Chronic Fatigue Syndrome

Cortical release refers to a set of therapeutic practices and exercises aimed at reducing tension and promoting relaxation within the central nervous system. These techniques involve various mindfulness-based strategies, meditation, deep breathing exercises, and progressive muscle relaxation, among others. The goal of cortical release drills is to alleviate the overactive and hyperaroused state of the nervous system often observed in individuals with CFS.

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a complex and debilitating condition characterized by persistent and unexplained fatigue, often accompanied by a range of other symptoms such as pain, cognitive difficulties, and sleep disturbances. While the exact cause of CFS remains unclear, research into its underlying mechanisms has revealed a potential link between cortical release and symptom management.

Several studies and anecdotal evidence suggest that the chronic stress and overactivation of the sympathetic nervous system seen in CFS patients may exacerbate their symptoms. Cortical release drills can help mitigate this overactivity by promoting a shift toward parasympathetic dominance, which is associated with relaxation, reduced stress, and improved recovery.

Here are some key points to consider regarding the role of cortical release in CFS:

Stress Reduction

Cortical release techniques are effective in reducing stress and anxiety levels. Stress can exacerbate CFS symptoms, so incorporating relaxation practices into a patient's routine may help alleviate their condition.

Improved Sleep

Many individuals with CFS struggle with sleep disturbances. Cortical release drills can enhance sleep quality by calming the nervous system and promoting restful sleep.

Enhanced Cognitive Function

Cognitive difficulties are a hallmark of CFS. Mindfulness-based cortical release practices can improve cognitive function by reducing brain fog and enhancing mental clarity.

Pain Management

Chronic pain is often associated with CFS. While cortical release may not directly alleviate pain, it can help patients manage their discomfort by reducing the stress response, which can exacerbate pain perception.

Holistic Approach

Cortical release is part of a holistic approach to managing CFS. Combining these practices with other strategies such as graded exercise therapy, pacing, and dietary modifications can lead to more comprehensive symptom management.

Individualized Care

It's essential to recognize that CFS is a highly individualized condition. What works for one patient may not work for another. Tailoring cortical release drills to each patient's specific needs and preferences is crucial for success.

In conclusion, while there is no cure for Chronic Fatigue Syndrome, cortical release drills offer a promising avenue for symptom management.

 By addressing the role of the nervous system and promoting relaxation, these techniques can contribute to an improved quality of life for individuals living with CFS. However, it's important that patients consult with healthcare professionals who are knowledgeable about CFS to develop a personalized treatment plan that includes cortical release as part of a multifaceted approach to managing this challenging condition.

[peakwellness]

Usual Conditions That Can Benefit from Functional Medicine

How Does Functional Medicine Work?

Functional medicine is an approach to healthcare that focuses on treating the root causes of illness rather than merely addressing the symptoms. It combines elements of conventional medicine with a more holistic and patient-centered approach. The key principles of functional medicine include:

Individualized Care

Addressing Root Causes

Emphasis on Prevention

Integrative Approaches

The process of functional medicine typically involves a thorough assessment of a person's medical history, lifestyle factors, and symptoms. This may include extensive laboratory testing to identify imbalances or dysfunctions. Based on the findings, a personalized treatment plan is created, which may include dietary and lifestyle modifications, targeted supplementation, stress management techniques, and other interventions. The progress of the patient is regularly monitored, and treatment adjustments are made as necessary.

Functional medicine doctor in Gurugram aim to partner with their patients and empower them to take an active role in their own health and well-being. The goal is to achieve optimal health and vitality by addressing the underlying causes of disease and promoting balance in the body's systems.

Usual Conditions That Can Benefit From Functional Medicine:

Functional medicine can be beneficial for a wide range of health conditions. While the approach focuses on addressing the underlying causes of illness rather than targeting specific diseases, there are several common conditions for which functional medicine may offer benefits. Some examples include:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): Functional medicine can help identify factors contributing to fatigue, such as hormonal imbalances, nutrient deficiencies, gut issues, and chronic infections.

Digestive Disorders: Conditions like irritable bowel syndrome (IBS), inflammatory bowel disease (IBD), and acid reflux can often be addressed through functional medicine approaches, which consider gut health, diet, food sensitivities, and the gut microbiome.

Hormonal Imbalances: Functional medicine can be helpful for conditions such as polycystic ovary syndrome (PCOS), thyroid disorders, adrenal dysfunction, and menopause-related symptoms, by addressing underlying imbalances, lifestyle factors, and nutrient deficiencies.

Autoimmune Conditions: Functional medicine aims to identify and address triggers and imbalances that contribute to autoimmune diseases such as rheumatoid arthritis, lupus, Hashimoto's thyroiditis, and multiple sclerosis.

Mental Health Disorders: Functional medicine recognizes the connection between the mind and body and can provide support for conditions like depression, anxiety, ADHD, and insomnia by considering factors such as nutrient deficiencies, gut health, inflammation, and stress management.

Chronic Pain: Functional medicine approaches can help with conditions like fibromyalgia, migraines, and chronic back pain by exploring underlying factors such as inflammation, nutrient deficiencies, hormonal imbalances, and lifestyle factors.

Metabolic Syndrome and Type 2 Diabetes: Functional medicine can help address metabolic dysfunctions and insulin resistance by focusing on diet, exercise, stress management, and optimizing metabolic health.

It's important to note that functional medicine does not replace conventional medical care but rather complements it. It can work alongside traditional treatments to provide a more comprehensive and individualized approach to healthcare. Consulting with a qualified functional medicine doctor in Gurugram can help determine the most suitable approach for addressing specific health conditions.

[beamorgan]

Keep records!

I'll preface this by saying it's very annoying to be told that the thing you should do with your minimal energy is waste it on a useless activity like keeping an activity diary. 1) yes, it does suck to waste your energy on that 2) it's not actually a waste in the long run, I promise and 3) when you get enough practice, you might not need to write it down anymore, your ability to judge it will become much more instinctive

so. how to actually do this? there are loads of different ways. Here are a few I've tried over the years (I've been doing this so long that I'm usually in the 'instinctive' group, but occasionally my energy levels or my activities get a bit of a shake up and I have to go back to basics)

First, rate your energy

loads of ways to do this. there's the classic spoons approach - how many spoons do you have today? quantify it. Rate it out of 10. Go RottenTomatoes style with a percentage - is it a 50% day? a 30% day?

This can be very hard to judge. Nothing made me want to scream more than when I would visit my ME/CFS doc and she'd ask me to quantify how I'd felt recently. But it is really useful to a ballpark idea of how much energy you feel like you've got available, because that's the first step in learning how much energy you've actually got.

Now that you've got three stars on the sticker chart or a stick figure drawn with a mostly flat mouth but it's curving up a little bit on one side (you don't have to rate your energy with numbers if that doesn't work for you!), it's time to track your activity.

Again, loads of ways to do this. A selection:

Traffic Light System

This is classic, and the very first version of this I ever tried. Activity is split into three categories --

Low energy (green) - these require little to no energy output from you. Doing them either makes you feel the same, or better. They might be: stretches in bed. listening to music. brushing your teeth while sitting down. watching youtube playthroughs. reading a book, in print or audiobook. sitting outside in the sunshine. making a cup of your prefered beverage. having a bath. cuddling a pet.

Medium energy (orange/yellow) - these require a fair amount of energy output from you. Doing them tires you out, and you may need to rest or switch to a green activity afterwards. They might be: taking a shower standing up. cooking a dinner involving veg preparation. calling a friend for a chat. a short stroll down the road. watering your plants. changing a lightbulb. playing a videogame. knitting. checking your emails.

High energy (red) - these take most or all of your energy. They might be the only thing you really do that day. Afterwards you might need to nap or go straight to bed or generally lock yourself in a dark room away from other people. They might be: going for coffee with a friend. doing your physio exercises. a day out to the aquarium. cooking for a dinner party. taking a walk. a therapy session. changing your bedlinen. writing fanfic. trying a new hobby. going to a new place that you're not sure will be accommodating (remember to account for stress while categorising!)

What activities go in each category will be very different for everyone. You've just got to know how it works for YOU. It can also be useful to work out how many orange/yellow activities=a red activity. Can you do two oranges with the energy you need for a red activity? four oranges?

Spoons

Another classic. How many spoons does it take to do A Thing? I find this really useful for when literally everything takes your energy. A bath is one spoon. Brushing your teeth is two spoons. Showing standing up is four spoons. Cooking a microwave dinner is seven spoons, including standing up between stirs.

Monitor post-extertional malaise

This is another one that requires quantifying how you feel after doing an activity. You can think of it like keeping your eye on the health bar in a video game (I don't play videogames, that may be a very incorrect analogy).

The question: How much did that take out of me?

You can measure this in recovery time: you need to lie down for half an hour. you needed a two hour nap. you needed a full night sleep. you needed two days of low activity.

You can measure this whatever rating system you used in the first step. This took three spoons from the day's total. This took two stars. The smiley face became a half-frown. You lost 40%.

(Another thing that's useful information is how long it takes for the consequences to hit? My post exertional malaise is WORSE on the second day after high activity than it is on the day after. I don't really know the cost of something until day 2.)

There are other ways of measuring this stuff out there. Chat with other chronically ill and disabled folks, we all come up with our own tricks, these are just the simplest ones I've personally tried.

Now comes the maths. Don't be scared, it doesn't have to be real maths, we just need to know

How much can you do with X energy?

On a 40% day, can you do two orange activities and an unlimited number of green ones?

On a kinda smiley face day, can you spare four spoons for washing/eating and two spoons for something fun like watching TV?

On a four star day, how long can you be around friends before you need a nap?

These are all patterns that become clear the more data you have.

You don't have to do this with everything

If you know exactly how much your hygiene routine takes out of you, you can take that as a baseline and just kind of ignore it. This was the first thing I stopped tracking way back when, and I haven't done it since.

Make a plan

If you're a scheduler, take a moment early in the day to work out how much energy you've got and what you need/want to do that day. Plan in breaks for rest or green activities. (I have a tiny whiteboard that I use to make a plan for each day, broken down by the hour).

LIFE HAPPENS. THROW OUT THE PLAN IF NECESSARY. MAKE A NEW ONE IF YOU CAN

If you go by vibes or whatever, there are still ways to keep track on the fly. If you're out an about, keep notes or a tickbox list of available spoons on your phone. Have green/orange/red bracelets that you move from one wrist to the other when they get 'used up.' If you, like me, don't really leave the house, keep a tally or star chart throughout the day as you use up your energy reserve (I also love my tiny whiteboard for this).

If something can have a wildly variable impact, I'd recommend accounting for the highest possible toll. If that's how it goes, you've made sure you're not pushing beyond your limit. If it didn't take that much out of you, yay, you've got spare energy. Use it as wisely or as unwisely as you wish

Finally,

YOU DESERVE REST

Whether or not you take any of this (possibly unsolicited) advice, or if you think I should fuck off while you wallow actually (fair, chronic illness and energy limitations are a bastard), YOU DESERVE REST.

I know it's hard to internalise. I know the resentment and guilt and shame and everything else is waiting to whack you with a mallet the moment you take your foot off the gas. But the only way through is, ironically, to sit down for a bit. Have a nap. Pick one of those green activities to enjoy in the meantime, before you've recharged enough for orange or red.

Also, EVEN IF YOU MISJUDGE IT AND YOUR ENERGY BANK GOT OVERDRAWN (this metaphor is still being workshopped) YOU STILL DESERVE REST. EVEN IF YOU "DID THIS TO YOURSELF." I DON'T CARE. HAVE A NAP.

I hope literally any of this has been helpful.

Sincerely, the 12+ years I've spent in these trenches with you.

Story of my life 🙄😅

[myalgicencephalomyelitiscfstom]

BODY POLITIC @itsbodypolitic

Graded Exercise Therapy (#GET), once recommended as "treatment" for patients with #MECFS, has been found in multiple studies to instead cause patients *significant* harm. Thread graphics by Body Politic Vice Pres. Lauren Nichols:

In 1989 an erroneous & damaging paper about a “new approach” to chronic fatigue emerged in a British medical journal.

---

In it, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) was dismissed as psychological. News flash: it isn’t. Not even remotely. It stated that the pain patients felt after exercising was in their heads and that if they exercised enough, their symptoms would subside.

“The paper’s authors recommended cognitive behavioral therapy combined with a gradual increase in exercise, even if symptoms got worse....Unlike other diseases like heart failure, pulmonary hypertension, and kidney disease where exercise is tolerated…It’s not with ME/CFS”

One defining characteristic of ME/CFS is that patients feel significantly worse after exertion. This symptom is called Post Exertional malaise (PEM). With ME/CFS, the main energy production system in the body (the aerobic energy system) is broken.

ME/CFS is an exertion disease. Problems with simply exerting oneself (physically or mentally) are often so serious that a federal report suggested ME/CFS be renamed “systemic exertional intolerance disorder" (SEID) as a result.

Studies indicate that exercise impairs an ME/CFS patient’s ability to produce energy and think. It negatively impacts the functioning of their brain and autonomic nervous gastrointestinal and immune systems.

Exercise produces a burst of inflammation in ME/CFS patients...one study found that walking, due to patients’ reduced ability to utilize oxygen, placed far more of a physiological burden on patients compared to healthy controls. And there are hundreds more studies...

A 2019 study found that GET caused deterioration of physical and mental health, worsening of existing symptoms, and development of new symptoms in ME/CFS patients. The news came years after doctors “treated” patients with GET, inflicting physiological and psychological harm.

Heroin was once a cure for coughs, cocaine was once a cure for tooth pain, and lobotomies were once a cure for mental disorders. The point? What was once used as a treatment is now known to harm.

Thread from Twitter: https://twitter.com/itsbodypolitic/status/1484993137139499009

[absolxguardian]

People with fibromyalgia, do you find exercise actually helps you or is it like how up until a few years ago the medical establishment thought it could actually lessen CFS in the long term. Because my diagnosis came with instructions to take up a form of gentle exercise- pilates, yoga, water aerobics, or tai-chi. (In addition to medication, I didn’t get told to exercise more, it’s just supposed to be one of several treatment approaches)

I’ve taken up tai-chi using the Great Courses’ lecture series. But it seems to me like adopting some taoist philosophy as mindfulness is going to do me more good than the actual exercises. I’ve only done two sessions, but I always feel worse afterwards, my legs hurt disproportionately and I’m pretty tired. Two to four years ago (before onset) I know I would have no problem with what I’m doing. But it’s not disastrous. 

As for other conditions I have that would contraindicate exercise, the chronic condition that likely brought on my fibro is my migraines. Which just means more punishment from my body for overdoing it, and I can’t move my head while exercising. There’s no problem here. And I have some kind of undefined congenital hypotonia, but like I said, things didn’t used to be this bad. My actual physical activity outside of exercise hasn’t decreased that much, just become that painful. There hasn’t been much atrophy. 

So has anyone with fibro benefited from exercise the way all these able-bodied people in my IRL life say it helps them (just in general) and should help me? I’ve been lectured about exercising my entire life and it just always made me feel like shit. 

[thebibliosphere]

hey, do you think i could ask you a chronic illness question? if you have the spoons, that is. i think you mentioned that you have chronic fatigue syndrome, could you explain how you figured out that it was CFS and not just fatigue from another illness? i have fibro but i’m so gosh dang tired All The Time that it regularly affects my daily life (today i went and rode my horse, went home and took a nap, then after i woke up ran errands, and then came home and needed *another* nap) that i’m wondering if it’s not just the fibro and if it’s something else too. if you have any advice it would be super appreciated (before i approach my PCP about it, at least) thanks! ^^

My situation is a little more complex in that I was wrongly diagnosed with CFS and forced into an exercise regime that made my EDS/POTS worse. Meanwhile, the doctor that said I had CFS refused to run diagnostic testing more in-depth than basic blood panel, and my unknown pernicious anemia was allowed to get gradually worse and worse until it was almost fatal.

Fast forward to several competent (and alarmed/panicking) doctors later, turns out I actually have several chronic and genetic conditions that cause chronic fatigue.

It's now up for debate if I have CFS at all, although it is possible due to the damage caused to my nervous system from the pernicious anemia. At present, my specialists are leaning toward "maybe not CFS???" because I've made a substantial recovery since getting the right treatment. I still have chronic fatigue, but as mentioned, I have at least 4 separate conditions that can cause fatigue so basically ¯\_(ツ)_/¯ lol.

I will say that chronic fatigue, even if it's not full-on chronic fatigue syndrome is still extremely difficult to live with for those who endure it. Fibromyalgia can absolutely be a cause of it, and while some doctors might dismiss it as "just" fatigue from the fibro, there's nothing "just" about the kind of fatigue that comes with any chronic ailment. It's not as outright debilitating as CFS, especially when CFS patients are in an active flare*, but it can impact our lives to a significant degree. Which it sounds like it is for you, so I would strongly urge you to speak to your doctor to make sure there's nothing else going on or if there might be more they can do to help your energy levels.

Anyway, I am sorry I can't help you more directly. I spent close to a decade trying to prove I didn't have CFS because it didn't feel like the right diagnosis for me, so my experience is the wrong way around to be helpful.

Hopefully, there will be some lovely people in the comments who can help you out.

*Jennifer Brea talks on her Twitter about flare-ups, and also goes into what that can mean on her documentary Unrest, which I think is actually on Netflix rn

[anumberofhobbies]

Actually, in UK you can be forced in to treatment, especially for ME/CFS, and if you are a child ...

“... Instead of getting the help they need, many people with ME, such as Angus Rodwell, are disbelieved. They are told they have a psychological—not physical—illness and are accused of faking. In a recent UK parliamentary debate on ME, Scottish National Party (SNP) Member of Parliament Carol Monaghan revealed that one in five children with the disease are investigated by social services, with some even being forcibly placed in a hospital or foster homes with destructive effects on their health. This is approaching a “national scandal,” according to Dr. Nigel Speight, a pediatrician from the North East of England who specializes in ME. Throughout his 30-year career, he has helped large numbers of families fight child protection cases where children with the condition have been at risk of removal from their parents. He says that anyone—including the child’s doctor, their teacher, and even a neighbor or relative—can get social services involved, and the decision to take a family to court often rests with people who have never even met the children.

“It’s a problem that has been getting worse in recent years,” Speight tells Broadly.“If doctors don’t get it right, then the other people involved in child protection, such as teachers concerned about a child missing school, also get it wrong, and you end up with this nightmare for the families.”

He adds that while he may have an “unduly pessimistic view” of the situation due to his involvement in many of the worst cases around the UK, these may be the tip of the iceberg.

For every family who have involvement with social services, he says, there are many others subjected to “disbelief and pressure, especially around school attendance.”“

https://meassociation.org.uk/2019/05/me-awareness-social-services-can-threaten-families-of-children-with-chronic-fatigue-05-may-2019/

See also:

“ Jun 11, 2019  ME is the biggest cause of long term sickness absence in schools [1]. 1 in 5 parents face child protection proceedings [2]. ME is not taught in medical schools and 80% of doctors think its psychosomatic [3]. Because healthcare professionals don't understand ME they start blaming the parents. ME is often mistaken for Fabricating or Induced Illness (Fii) a form of child abuse. ME is actively targeted in Fii training. Care for an ME patient is counterintuitive and goes against general medical training. Overexertion can cause a crash (flare in symptoms) for days/months/weeks. In severe cases it can cause relapses and patients become significantly more disabled for months/years; some never recover. The NHS recommends Graded Exercise Therapy where patients are told to increase activity and ignore symptoms. Multiple surveys have consistently shown that Graded Exercise makes over 50% of patients worse [4] and has been rejected by over 80 charities [5]. Parents are often left with a choice: give their child a harmful treatment or face prosecution. Lack of education leads to disbelief, mistreatment and abuse. Jessica Taylor-Bearman author of Behind Dark Glasses [6] talks about the care she received and the lasting impact. “

https://youtu.be/EyihXLvz1hY

Okay, guys, here me out. Just a friendly reminder that no doctor, nurse, or therapist knows your struggle better than you. None of them can force you to go under some therapy. None of them should decide if you're disabled enough to get help, and none of them has any right over your body.

Refusing a treatment does not mean you don't want to get better. Sometime the treatment can make things worse, and no doctor cares about that. So please, to all the disabled folks around here, don't let anybody try to force something on you. You know your disability more than anybody else