Ehlers Danlos Syndrome & Orthostatic Intolerance in Chronic Fatigue conditions

Emily Kate Stephens (38:10): Or, and in my case, mast cell activation realised only later that oh, I had the history of that the whole way through.

Peter Rowe (38:20): Well, and it's interesting that one of the thoughts we had at the beginning of the pandemic was that our patients would be really at risk for terrible troubles after Covid. And what has been fascinating to observe is that nobody in our clinic of over 500 patients, nobody who got Covid, had prolonged worsening of their symptoms. Really, and part of that is because we were already controlling their circulation. We were treating their allergies. We were treating their mast cell activation, and a number of observers have noted that people with treated mast cell activation sail through their Covid infection much more easily than people with untreated or unrecognised allergic inflammation from their mast cells, so the mast cells always start reacting when we get infections of any sort. So they may be a key player in the pathogenesis of these syndromes, both of orthostatic intolerance and the broader ME/CFS group. So that work is only just beginning.

Emily Kate Stephens (39:23): That's amazing. You just mentioned inflammation. In you mentioned allergic inflammation. What's your understanding of inflammation as a driver in these chronic fatigue conditions?

Peter Rowe (39:39): Yeah, it is likely to be a driver, but it's interesting that the typical blood tests that we use to test for inflammation, the erythrocyte sedimentation rate or ESR, and the C-reactive protein, they're usually normal in our patients. So you're not getting a big sign lighting up saying "Go for the inflammation," but many of the things that are involved, like the milk protein intolerance, gives you some sort of inflammation. The mast cell activation does. The orthostatic intolerance may, because if you get a reduction in blood flow to the brain, there's a thing called perfusion reperfusion injury that we know about from heart disease, that probably contributes to some of the inflammation in the rest of the body, right? If your muscles are not getting the amount of blood they need at that moment when you're upright, maybe when you lie down and they get a lot of blood flow, something changes. Those are all questions that are worth investigating.

Emily Kate Stephens (40:34): What are you investigating currently that we have not yet discussed that you think might move things forwards in this space.

Peter Rowe (40:44): So we've used a lot of low-dose naltrexone with good results, not in everybody, but broad enough improvements that we think that's a promising therapy. And I know that's being studied formally in some of the Long Covid studies that the NIH is funding. We are focusing our current research on the association of our patients with ME/CFS who have these areas of physical restriction and movement, like the brachial plexus abnormalities and the thoracic outlet syndrome. But we're trying to replicate, or we're seeing if we can replicate findings from about 15 years ago that showed that they had all kinds of problems with things like straight leg raise. You know, kids who are flexible but they can't get their leg up past 20 degrees without getting stretch or other symptoms. That's a paradox that we need to explain, and it's not because they're overly sensitive. It's that they're tight in certain parts of the body. That work is important because it leads to very practical interventions by physios, not to exercise them to health, but to clear out the areas of movement restriction, muscle spasm, myofascial tightness, using manual techniques that are quite gentle and well tolerated by even the really sick people with ME/CFS,

Emily Kate Stephens (42:05): And relatively accessible. And you're not talking about something that's overly complicated. No. Final question: There's what was the date? It was March 2024. You did an initial validation on the spider, which is a systemic symptom impact tool that's used for hypermobility-related disorders, but I thought this was an absolutely fascinating thing. This spider, because actually, it is so relevant. The majority of the symptoms, which are eight things around a spider, are so relevant to so many of these conditions,

Peter Rowe (42:42): Right, right,

Emily Kate Stephens (42:42): And you mapped the symptom sets on this spider's web. Essentially, you've sort of validated that as a tool that should be used in adolescents with these hypermobile related disorders. Is that something that we could actually employ more across the board to have a broader understanding of these conditions?

Peter Rowe (43:00): I'll just one caveat. I had a very small role in that study. It was done by physiotherapy colleagues in Europe, but very well done and very detailed work. And it that kind of thing gives you nice graphic representation of what which body system is most affected, and that might give you a very good insight into which one, as a physician or a clinician, you ought to treat first. Yeah. So I think your idea is a good one. Maybe we should expand that to a variety of other conditions, not just the hypermobile group.

Emily Kate Stephens (43:33): It was just reading your paper that made me aware of it, and then I went in to look at it, and it's used mainly with Ehlers-Danlos, isn't it? Yeah. Yeah. And I just thought that's such an amazing visual mapping of people's symptom sets, and yes, then prioritising what is really causing the biggest impact.

Peter Rowe (43:49): Yeah,

Emily Kate Stephens (43:50): Amazing. Thank you so much for your time today. What an absolute pleasure it was for me to have the opportunity to meet such a knowledgeable and empathetic doctor in person, who has developed such a deep understanding of these conditions, and this idea that we have the tools, we have the ability to improve situations for patients, even when we don't know the root of some of these illnesses, that's huge. I appreciate that it requires us being able to access doctors such as Peter Rowe, who are able to treat with that knowledge and kindness. But I do hope that this conversation gives you hope that there are treatments out there and there are people out there who are striving to make a difference. I wish you all the very best week and look forward to talking to you again soon. Thank you for listening to Make Visible. Please do like, follow, or subscribe to listen to our next episode, where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy-limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you, visit our website at makevisible.com.

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