If you live with both hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), you’re not an outlier.
Hypermobility shows up in a large share of people with ME/CFS, and researchers have proposed that the two conditions share underlying biology (inflammation that may damage connective tissue and worsen hypermobility) rather than just coincidentally overlapping (1).
Doctors miss the connection often enough that many people carry one diagnosis for years before anyone checks for the other (2).
This post looks at what the research says, why the overlap gets missed, and what it’s actually like to live with both, in the words of people in The Zebra Club, our community for those living with hEDS, HSD, and chronic pain.
Key Takeaways
- Joint hypermobility shows up in up to 30 to 57% of people with ME/CFS, far more than in the general population.
- Researchers think inflammation may be a shared mechanism, not just a coincidence, linking the two conditions.
- The overlap gets missed often: many people carry one diagnosis for years before anyone checks for the other.
- If you have both, hypermobility work and PEM pacing can seem to pull in different directions, but a nervous-system-first, start-small approach can hold both at once.
What is ME/CFS?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness defined by four things: profound fatigue that isn’t relieved by rest, post-exertional malaise (PEM), unrefreshing sleep, and either cognitive impairment and/or orthostatic intolerance(3).
PEM is the cardinal symptom, meaning it’s required for diagnosis (though the other features above have to be present too). It is defined as a delayed, disproportionate worsening of symptoms after physical, cognitive, or emotional exertion.
It’s the reason “just push through it” advice, common for almost every other kind of tiredness, can make ME/CFS significantly worse rather than better. (For the full breakdown of what PEM is and how it differs from ordinary fatigue, see What is Post Exertional Malaise (PEM)?)
Symptom severity varies widely from person to person. Some people are still able to work, though rarely without real difficulty, while others are housebound or bedridden(4).
Symptoms also tend to be cyclic rather than constant, with better days mixed in among worse ones, which means how someone is doing on any single day doesn’t tell you much about how they’re doing overall.
Researchers have documented physical changes in ME/CFS that show up on tests, not just symptoms people report: things like reduced blood flow to the brain, immune cells that behave differently than they should, and cells that struggle to produce enough energy (1, 4). It’s a physical illness, not a mental one, and the research increasingly shows this.
A note on naming
You’ll see the name written a few different ways. “ME,” “CFS,” and “ME/CFS” get used somewhat interchangeably, though ME (myalgic encephalomyelitis) is the more precise term for the neuroimmune illness, while “chronic fatigue syndrome” has at times been used more loosely. Most current research and patient organizations use “ME/CFS” to cover both.
How much overlap is there between ME/CFS and hEDS/HSD?
Hypermobility turns up far more often in ME/CFS than in the general population. A 2024 review found joint hypermobility in up to 30 to 57% of people with ME/CFS, fibromyalgia, POTS, and Long COVID, compared with 10 to 20% in the general population (1).
A registry study of 815 people with ME/CFS found that those with joint hypermobility were significantly more likely to also report EDS and POTS, and scored worse on quality of life measures for pain and physical functioning than those without hypermobility (5).
Want the deeper research on why these conditions overlap biologically? We’ve covered the inflammation and connective tissue mechanisms in detail here: [ME/CFS, EDS & Long COVID: The Inflammation Connection].
Why does this connection get missed?
Part of the answer is that the two conditions can look similar from the outside. Chronic pain, fatigue, and dysautonomia show up in both, so a clinician who isn’t specifically screening for hypermobility may land on an ME/CFS diagnosis and stop there.
The Ehlers-Danlos Society states plainly that doctors can misdiagnose someone with ME/CFS when hEDS or HSD is the underlying condition, and that some people carrying an ME/CFS diagnosis likely have unidentified hEDS or HSD underneath it (2).
The numbers back this up. In a 2021 study of 63 people with fibromyalgia and/or ME/CFS, 81% met Brighton criteria for joint hypermobility syndrome, yet only 23.5% of those found to have symptomatic hypermobility had ever received a hypermobility diagnosis before the study evaluated them (6).
The registry study mentioned above found something similar: people with ME/CFS and joint hypermobility were significantly more likely to also carry a family history of EDS, a hereditary pattern that often goes unrecognized until someone specifically looks for it (5).
If you’ve spent years with one diagnosis and only recently connected the dots to the other, you’re in very good company.
What members of The Zebra Club say it’s actually like
Research tells you how common this overlap is and some of the biology behind it. It doesn’t tell you what it’s actually like to live with both. We asked members with both ME/CFS and hEDS or HSD to describe it in their own words.
R explains ME/CFS this way:
“I describe ME/CFS as an ever present, constant tiredness that isn’t helped with rest. While most people have unlimited possibilities when they wake up, I need to be aware of my energy capacity, and how many tasks I’ll be able to do with that, on any given day.”
JM describes the same idea in more concrete, daily terms, budgeting a fixed and often small amount of energy across a day and a week:
“My battery runs out and goes flat if I don’t pace myself well enough. When I’m exhausted I can’t do anything but rest/sleep. I need to schedule in a sleep every afternoon to get through the day. I might only have a 30% of battery each day to start with. I only have so many spoons of energy in a day and one week and have to plan how I use them. I need a rest after for example meeting a friend for a cuppa for 90 mins and that’s all I can manage that day. I couldn’t then go for a walk or go shopping that day as well.”
That budgeting isn’t optional. Go over the limit, and PEM follows.
“If I go over that limit, post-exertional malaise (PEM) will occur. Even a ‘minor’ task can trigger PEM. And it’s not just from ‘too much’ physical activity, but also from mental and social activity, and stress. For me it feels like not only will the car ignition not start, there’s also no fuel in the tank.”
J describes a PEM flare in physical terms, and notes something specific to living with both conditions at once: hEDS symptoms flaring right alongside the PEM itself.
“If I go over my energy capacity, I feel sick later. That can include intense flu-like symptoms, brain fog, increased bodywide pain, and often my EDS will flare alongside and my joints will all get looser.”
R describes something similar during a crash: worsened pain, and other conditions getting harder to manage too, with no way to predict how long it will last.
“With a PEM flare I experience flu-like symptoms, extreme exhaustion, and dramatically increased pain levels. It also makes symptoms of other conditions worse. You also have no way to know if it’ll last a few days or if it’ll go on for weeks.”
JM’s description adds another layer worth sitting with: the loss of independence a flare can bring, and the emotional toll that comes with it.
“It can feel like a deep body exhaustion and severe pain. Needing lots more rest than usual if not resting constantly, maybe in bed. Not knowing when it will end. Effects my emotions, causes stress. I lose more independence with doing daily tasks, having to rely on my husband more. Have to cancel more plans if not all of them depending how bad the flare is.”
Between J and R, a pattern shows up independently in both accounts: PEM and hypermobility symptoms don’t stay in separate lanes. When one flares, the other often does too. It’s a pattern other Zebra Club members have described too, in a fatigue crash even outside a formal ME/CFS diagnosis.
As one member put it: “like the battery isn’t just empty but dead.” (More member voices on fatigue and crashes are in [Managing Fatigue and Its Impacts].)
J also points out something worth sitting with: no two people’s ME/CFS looks the same.
“People with ME/CFS have really widely varying experiences, so something that is hard for one person, might not be hard for another. Some people find it difficult to have a social life after work. Some people struggle with work. Some people are homebound. Some people must stay only in the dark and can’t open their eyes or talk. All are ME/CFS and all are difficult for the person experiencing them.”
When exercising for hypermobility and pacing for PEM seem to pull in different directions
Here’s the tension that’s specific to having both conditions. Hypermobility management often calls for strengthening and stability work around unstable joints. ME/CFS calls for minimizing exertion to avoid PEM.
Those two instructions can seem to contradict each other, and figuring out how to hold both at once is one of the harder parts of managing this combination.
There’s no single correct starting point. What we’ve found works, and what The Integral Movement Method (IMM) is built around, is starting far smaller than feels necessary, and building trust with your own body’s response before adding anything.
J’s approach shows what that looks like in practice, not as a general principle, but as an actual system:
“For TZC, evaluate your capacity carefully and play around to find a starting place that will not give you PEM. Because everyone’s capacity is different there’s no correct starting place for ME/CFS… I need to stick only to movement snacks, and only certain ones which are safe for me. I do them most days and wait at least a week before I add something new, an added rep of a movement or a new movement. I also generally require myself to be at baseline (not in a crash) for three days in a row before changing my routine. I combine meditation, breathing, and movement snacks daily. It’s a very slow way to progress, but it’s what I can do.”
That pace (a week between changes, three consecutive baseline days before adjusting anything) isn’t overly cautious. For a body where overdoing it can mean days or weeks of setback, it’s what sustainable can actually look like.
R found something unexpected in applying The Zebra Club’s existing approach to ME/CFS specifically:
“Thankfully, I think a lot of ME/CFS awareness is already built in to Zebra Club movement. It was a huge relief realising all the movement prompts I try to remember were already included in the lessons: go slow, listen to your body, don’t push through, and that rest and relaxation are also just as important.”
This is where the IMM’s nervous-system-first approach matters most. IMM starts with regulating the nervous system and building proprioception and stability before adding load, never with a fixed program of increasing exertion.
That framing works whether the limiting factor is joint instability, PEM, or both at once. And on a day when the body says no, the right answer can be rest, breathing, or a single movement snack. That’s not falling behind. That’s the plan working.
For a full walkthrough of pacing strategy and more member insight, see [How to Pace with EDS and Hypermobility: A Gentle Guide from the Community].
Living with ME/CFS and hEDS or HSD, and looking for a movement approach built around both? The Zebra Club’s classes are designed to work with PEM, not against it, so you can move at whatever pace your body has today.
Works Cited
- Ganesh R, Munipalli B. Long COVID and hypermobility spectrum disorders have shared pathophysiology. Front Neurol. 2024;15:1455498.
- Ehlers-Danlos Society. Chronic Fatigue in Ehlers-Danlos Syndrome Hypermobile Type and Hypermobility Spectrum Disorder (for Non-experts).
- Institute of Medicine (National Academy of Medicine). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press; 2015.
- Komaroff AL, Lipkin WI. ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature. Front Med. 2023;10:1187163.
- Mudie K, Ramiller A, Whittaker S, Phillips LE. Do people with ME/CFS and joint hypermobility represent a disease subgroup? An analysis using registry data. Front Neurol. 2024;15:1324879.
- Eccles JA, Thompson B, Themelis K, et al. Beyond bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification: an observational study. Clin Med. 2021;21(1):53-8.
