Kiristar
Senior Member (Voting Rights)
A friend sent me this this morning.
Hopefully he has the best of intentions but I always worry when people are building a paid for platform and claim they have the sole answer for ME/CFS
To start with we know that Decode found 8 loci and precision life 14 "clusters" while this cherry picks one single gene and one phenotype (CFS/hEDS/Fibro).
BTW I have neither hEDS nor Fibro.
Link and Copied text below
drasays.beehiiv.com
Begin forwarded message:
October 11, 2025 | Read Online
Breaking Research- The Overlap Between ME/CFS, Fibromyalgia & Ehlers-Danlos — and Why It’s Finally Being Understood
New research finally explains why so many with fibro or ME also have hypermobility.
Hi Friend
If you live with ME/CFS, Fibromyalgia, or Ehlers–Danlos Syndrome (hEDS), you’ve probably realised something that medicine is only just beginning to confirm:
These conditions often overlap, and the underlying biology may be deeply connected.
For years, people were told these illnesses were “unexplained” or “psychological.”
But new research is painting a very different picture — one that validates what so many patients have felt for years.
What the Latest Science Says
A 2025 genome-wide association meta-analysis found two significant genetic loci associated with hypermobile Ehlers–Danlos Syndrome (hEDS) — one near the ACKR3 gene (on chromosome 2).
This gene is involved in connective tissue signalling, immune modulation, and pain processing, suggesting that hEDS may finally have a genetic foundation.
Even more importantly, researchers discovered that these same pathways overlap with those seen in:
Fibromyalgia (chronic pain sensitisation)
ME/CFS (mitochondrial dysfunction and post-exertional malaise)
POTS and dysautonomia (autonomic imbalance)
Mast cell activation and neuroinflammation
Together, these findings suggest that these conditions sit along a shared neuroimmune–connective tissue spectrum — where the body’s connective tissues, immune system, and nervous system all become dysregulated.
Why Symptoms Overlap So Much
When the body’s “wiring” becomes hypersensitive, it can show up in multiple systems:
Nervous system: overactive “fight-or-flight” response, poor vagal tone, anxiety, or crashes after exertion.
Musculoskeletal: hypermobility, joint pain, myofascial tightness, micro-instability.
Immune: mast cell activation, inflammation, sensitivities, post-viral fatigue.
Energy system: mitochondrial inefficiency, resulting in low stamina and post-exertional malaise.
It’s not “all in your head” — it’s all in your system.
What You Can Do (Even Before Diagnosis Clarity)
While genetics help explain why these conditions overlap, day-to-day management still depends on nervous system regulation and lifestyle tuning.
Here are a few steps that help nearly everyone on this spectrum:
Pace intelligently.
Use the “energy envelope” rule: never spend more than 80% of what your body can comfortably handle. This prevents crashes and helps recondition mitochondria.
Support connective tissue.
Gentle strengthening, vitamin C, magnesium, and collagen-rich foods can help stabilise hypermobile joints.
Stabilise the nervous system.
Try daily vagal tone exercises — slow diaphragmatic breathing, humming, or cold-water facial dips. These strengthen parasympathetic regulation.
Reduce inflammatory triggers.
Prioritise stable blood sugar, anti-inflammatory foods, and good sleep hygiene. Even small changes here can quiet an overactive immune system.
Track and reflect.
Keeping a symptom diary or using wearable data (HRV, sleep, steps) gives early clues about your regulation patterns — helping you intervene before crashes happen.
How The Mend Collective Helps
The Mend Collective was designed precisely for this overlap — to guide people living with ME/CFS, fibromyalgia, and hEDS through a structured but gentle recovery framework.
Here’s how we do it:
Assessment first. We map your symptoms, triggers, and energy profile before suggesting any interventions.
Personalised weekly plan. Nutrition, gentle movement, pacing, and trauma-informed therapy tailored to your condition type.
Live sessions & community. Two daily sessions — one therapeutic, one coaching — plus a forum where others share the same lived experience.
Wearable integration. Track HRV, sleep, and recovery to spot nervous system improvements week by week.
Education modules. Learn the science behind your body — from mitochondria to microglia — so you can heal with understanding, not fear.
A New Chapter in Chronic Illness
The science is finally catching up to what patients have been saying all along:
these conditions are real, connected, and modifiable.
At The Mend Collective, our goal is to stabilise dysregulated body systems — particularly the autonomic and neuroimmune networks — so recovery processes can take place naturally.
You’ll be the first to know when doors open.
Together, we’ll build a bridge between cutting-edge science and everyday recovery.
With care and hope, as always reply if you have any questions.
Dr Ahmed (dra_says instagram, facebook and tik tok)
Founder, The Mend Collective
Hopefully he has the best of intentions but I always worry when people are building a paid for platform and claim they have the sole answer for ME/CFS
To start with we know that Decode found 8 loci and precision life 14 "clusters" while this cherry picks one single gene and one phenotype (CFS/hEDS/Fibro).
BTW I have neither hEDS nor Fibro.
Link and Copied text below
Breaking Research- The Overlap Between ME/CFS, Fibromyalgia & Ehlers-Danlos — and Why It’s Finally Being Understood
Discover groundbreaking research revealing the genetic connections between ME/CFS, fibromyalgia, and Ehlers-Danlos syndrome, validating patient experiences and offering new insights into chronic conditions.
drasays.beehiiv.com
Begin forwarded message:
October 11, 2025 | Read Online
Breaking Research- The Overlap Between ME/CFS, Fibromyalgia & Ehlers-Danlos — and Why It’s Finally Being Understood
New research finally explains why so many with fibro or ME also have hypermobility.
Hi Friend
If you live with ME/CFS, Fibromyalgia, or Ehlers–Danlos Syndrome (hEDS), you’ve probably realised something that medicine is only just beginning to confirm:
These conditions often overlap, and the underlying biology may be deeply connected.
For years, people were told these illnesses were “unexplained” or “psychological.”
But new research is painting a very different picture — one that validates what so many patients have felt for years.
What the Latest Science Says
A 2025 genome-wide association meta-analysis found two significant genetic loci associated with hypermobile Ehlers–Danlos Syndrome (hEDS) — one near the ACKR3 gene (on chromosome 2).
This gene is involved in connective tissue signalling, immune modulation, and pain processing, suggesting that hEDS may finally have a genetic foundation.
Even more importantly, researchers discovered that these same pathways overlap with those seen in:
Fibromyalgia (chronic pain sensitisation)
ME/CFS (mitochondrial dysfunction and post-exertional malaise)
POTS and dysautonomia (autonomic imbalance)
Mast cell activation and neuroinflammation
Together, these findings suggest that these conditions sit along a shared neuroimmune–connective tissue spectrum — where the body’s connective tissues, immune system, and nervous system all become dysregulated.
Why Symptoms Overlap So Much
When the body’s “wiring” becomes hypersensitive, it can show up in multiple systems:
Nervous system: overactive “fight-or-flight” response, poor vagal tone, anxiety, or crashes after exertion.
Musculoskeletal: hypermobility, joint pain, myofascial tightness, micro-instability.
Immune: mast cell activation, inflammation, sensitivities, post-viral fatigue.
Energy system: mitochondrial inefficiency, resulting in low stamina and post-exertional malaise.
It’s not “all in your head” — it’s all in your system.
What You Can Do (Even Before Diagnosis Clarity)
While genetics help explain why these conditions overlap, day-to-day management still depends on nervous system regulation and lifestyle tuning.
Here are a few steps that help nearly everyone on this spectrum:
Pace intelligently.
Use the “energy envelope” rule: never spend more than 80% of what your body can comfortably handle. This prevents crashes and helps recondition mitochondria.
Support connective tissue.
Gentle strengthening, vitamin C, magnesium, and collagen-rich foods can help stabilise hypermobile joints.
Stabilise the nervous system.
Try daily vagal tone exercises — slow diaphragmatic breathing, humming, or cold-water facial dips. These strengthen parasympathetic regulation.
Reduce inflammatory triggers.
Prioritise stable blood sugar, anti-inflammatory foods, and good sleep hygiene. Even small changes here can quiet an overactive immune system.
Track and reflect.
Keeping a symptom diary or using wearable data (HRV, sleep, steps) gives early clues about your regulation patterns — helping you intervene before crashes happen.
How The Mend Collective Helps
The Mend Collective was designed precisely for this overlap — to guide people living with ME/CFS, fibromyalgia, and hEDS through a structured but gentle recovery framework.
Here’s how we do it:
Assessment first. We map your symptoms, triggers, and energy profile before suggesting any interventions. Personalised weekly plan. Nutrition, gentle movement, pacing, and trauma-informed therapy tailored to your condition type. Live sessions & community. Two daily sessions — one therapeutic, one coaching — plus a forum where others share the same lived experience. Wearable integration. Track HRV, sleep, and recovery to spot nervous system improvements week by week. Education modules. Learn the science behind your body — from mitochondria to microglia — so you can heal with understanding, not fear.A New Chapter in Chronic Illness
The science is finally catching up to what patients have been saying all along:
these conditions are real, connected, and modifiable.
At The Mend Collective, our goal is to stabilise dysregulated body systems — particularly the autonomic and neuroimmune networks — so recovery processes can take place naturally.
You’ll be the first to know when doors open.
Together, we’ll build a bridge between cutting-edge science and everyday recovery.
With care and hope, as always reply if you have any questions.
Dr Ahmed (dra_says instagram, facebook and tik tok)
Founder, The Mend Collective
