If you've spent any time reading about hypermobile Ehlers-Danlos Syndrome (hEDS), you've probably heard it described as a connective tissue disorder. The usual explanation is that the body's connective tissues are built a little differently, leading to more flexible joints, frequent injuries, chronic pain and instability.

But many people living with hEDS know that's only part of the story.
What about the dizziness? The fatigue? The brain fog? The gut problems? The allergies, mast cell issues, POTS, slow recovery from illness, and the way symptoms seem to flare after stress or infection?

A recently published research paper has taken an interesting step towards answering that question.
Before we dive in, it's important to say that this blog is not my opinion or interpretation of the science. It's simply my attempt to translate a fascinating research paper into everyday English. If you'd like to read the original study yourself, you can find it here.

Now, let's unpack what the researchers actually found.

So... what did they do?
Rather than looking at people's genes, the researchers looked at the proteins circulating in their blood. Think of it like this:
Your genes are the recipe book.
Proteins are what your body is actually cooking today.
By measuring these proteins, researchers can get a snapshot of what systems in the body are active and how they're behaving.

The study compared blood samples from women with hypermobile EDS to women without hEDS.
What surprised the researchers?
They expected to find lots of differences in proteins related to connective tissue.
Instead...
Most of the differences they found were related to the immune system.
Many of the altered proteins were involved in:

• immune function
• inflammation
• the body's first-line defence against infection
• blood clotting
• regulation of blood vessels

Only one of the significantly different proteins was directly related to connective tissue itself.
That doesn't mean connective tissue isn't important in hEDS. It simply suggests that there may be much more happening throughout the body than we've previously appreciated.

Why is that exciting?
If you've ever felt like your symptoms don't fit neatly into the "loose joints" explanation, you're certainly not alone.

Many people with hEDS also experience conditions like:

• POTS
• Mast Cell Activation Syndrome (MCAS)
• chronic fatigue
• IBS and digestive issues
• frequent allergies
• brain fog
• poor recovery after illness

For years, researchers have recognised these conditions often occur together, but they've struggled to explain why.
This study suggests that changes in the immune system may be one piece of that puzzle.
It's important to be clear here: the researchers are not saying that hEDS is an autoimmune disease, nor are they saying the immune system causes hEDS.
They're saying they found measurable differences in immune-related proteins that deserve further investigation.
That's a very different statement—and a much more scientifically responsible one.

Does this explain why symptoms flare?
Possibly.
The researchers also found changes in pathways involved in inflammation and the body's response to stress.
Many people with hEDS describe becoming significantly more symptomatic after things like:

• viral infections
• COVID
• glandular fever
• surgery
• major life stress
• pregnancy

This study doesn't prove those events cause worsening symptoms. However, it does support the idea that the immune system and inflammatory responses may play a bigger role than we once thought.

What doesn't this study prove?
Good science is just as much about recognising what we don't know as what we do know.
This research does not prove that:

• the immune system causes hEDS
• everyone with hEDS has immune dysfunction
• there is now a blood test that diagnoses hEDS
• immune medications should be used to treat hEDS

Instead, it tells us something much simpler:
People with hypermobile EDS appear to have a distinct pattern of proteins circulating in their blood, particularly involving immune and inflammatory pathways.
That's an important finding, but it's only one piece of a much bigger puzzle.

Why I think this research matters
​One of the things I love most about chronic pain research is watching the picture become more complete over time.
For many years, hypermobile EDS was viewed largely through the lens of joints and connective tissue.
Studies like this remind us that our bodies are incredibly interconnected. The immune system, nervous system, connective tissue, blood vessels and inflammatory pathways all influence one another. Looking at hEDS as a whole-body condition may help researchers better understand why people experience such a wide variety of symptoms.
As someone who works with many people living with hypermobility and persistent pain, I find that encouraging.
It doesn't give us all the answers.
But it does suggest that researchers are asking better questions.
And that's often where real progress begins.

Want to discuss this research with a therapist who is experienced in treating hypermobility, EDS and associated conditions? Book with Mel or Sarah, we'll be more than happy to discuss what we know during your treatment.

Multiple Sclerosis is a many, many layered condition that has a long list of symptoms, including pain, fatigue, and weakness. There is currently no cure for MS.

But just because there is no cure, does that mean there is nothing that can be done to help reduce these symptoms and maintain muscle health? From clinical experience, I've found massage and a variety of myotherapy techniques to be incredibly useful for patients living with MS. You can read more about my clinical experience with treating MS in this blog.

I've been running for The May 50K during COVID19 isolation to raise funds and awareness for MS, so I thought its only fitting that I write up a bit of a literature review on the research!

You can read the article here for the full study details, as published in the International Journal of Therapeutic Massage and Bodywork in December 2016.

What does the research say specifically about massage therapy and MS?
There are a few things to keep in mind when we read this study.

Firstly, manual therapies are hard to study, because the techniques used are almost always different every single treatment. As experienced therapists, we select techniques that are the most relevant to the patient each time they come for an appointment, and our selections are based off what we assess in the consultation, as well as what the patient agrees to on the day - for example, some days a deep pressure trigger point treatment can be tolerable and helpful, and other days it may feel too much.

Secondly, Multiple Sclerosis affects people in widely different ways. There is no one "best" treatment technique for MS, and the symptom types, areas and intensity are vastly different from person to person.

Keeping that in mind, lets have a look at how these researchers completed their study, and what they found.

How did they design a study for massage therapy for Multiple Sclerosis?
A specific massage sequence was designed for the study. This sequence was to be followed to the letter for every patient at every session, regardless of the symptoms on the day. This isn't an ideal way of providing a treatment in a clinical setting, however in a research setting its important to be able to make the tested treatment or therapy able to be reliably the same for every subject in the study. The sequence involved a full body massage therapy routine which included gliding strokes, kneading, cross fibre friction, and trigger point treatment.

The 24 participants were scheduled for a weekly one hour treatment using the specific massage routine for 6 weeks. If a participant missed a scheduled treatment, they aimed to reschedule it within a week, so that each participant received 6 identical treatments over the course of no longer than 8 weeks.

How did they measure and assess it?
Five measurement scales were used to assess the outcomes in a variety of symptoms. The participants recorded scores for

• fatigue on the Modified Fatigue Impact Scale (MFIS)
• spasticity on the Modified Ashworth Scale (MAS)
• pain on the MOS Pain Effects Scale (MOS)
• emotional and mental health on the Mental Health Inventory (MHI)
• quality of life using the Health Status Questionnaire (HSQ)

These were measured before and after treatments to analyse any changes to the symptoms.

What did they find out?
The results overall suggested that massage therapy was a safe and useful tool in providing relief from fatigue and pain, and improving mental health and general quality of life.

Fatigue - The MFIS indicated that 22 out of 24 participants reported decreased fatigue scores. There was a significant correlation between fatigue decreasing and pain decreasing.
Spasticity - 19 out of 24 participants completed the MAS spasticity evaluation, and of these, 16 reported experiencing spasticity symptoms ranging from slight to considerable increase in muscle tone. There were no significant changes in spasticity after the end of the 6 week treatment period.
Pain - On average, participants reported a significant 18% reduction in pain on the MOS Pain Effect Scale. The reduced pain scores correlated with improved mental health scores.
Mental Health - A significant increase in the total scores on the MHI indicates overall mental health improvement. A small number of participants did not improve on some subscales, such as anxiety (3 participants) and depression (1 participant)
Quality of Life - Overall, the quality of life scores on the HSQ showed improvement. Emotional and Social subscales showed more improvement than Health and Physical. The results indicated that as fatigue and pain decreased, measures of quality of life increased.

Can we help you?
Do you have MS and want to discuss treatment options? Our clinic is temporarily closed due to COVID19, but we expect to reopen by June. Check our availability on our  online bookings page for updates.

Are you receiving assistance from MS Employment Services?
You may be eligible for funded Myotherapy treatment through your Occupational Therapist. Contact your OT to see if you can apply, and they will forward us the documents to begin the process for you.
Do you have MS, you're currently working or seeking work, and you're not receiving assistance? Check the MS Employment Services website to see if you're able to receive support.