I truly hope that some medical professionals see this post, think about the symptoms one of their patients are experiencing, and recognise that their patient has Ehlers-Danlos Syndrome and are not making it up.
Why is this important?
I am fed up with seeing patients experiencing unnecessary medical trauma.
Patients that I work with that have EDS are often relieved that I have simply heard of the. condition. It is utterly crazy that a health professional simply knowing, and having some understanding, of their condition is something that gives a lot of comfort to someone living with this condition.
How are people with EDS treated by healthcare professionals?
I have been told how people have been accused of being drug seeking, malingering, hypochondriacs.
It has been shown that people with EDS can experience medical / clinician-associated trauma from the poor treatment they receive prior to receiving an EDS diagnosis (study).
Another study found that 91% of people with EDS currently experience mental health difficulties, 43% experience past institutional and provider betrayal, 40% anticipate difficult experiences in future interactions with healthcare professionals, and 22% have a lack of trust in their healthcare provider.(study).
Terrible experiences with healthcare professionals can lead to anxiety and panic when having to visit healthcare providers in the future (article)
The long and short of it, people with EDS often are treated without compassion and care. That is wrong.
What is Ehlers-Danlos Syndrome?
EDS is a relatively rare condition, made up of 13 different types.
It is a disorder of the connective tissue that supports the skin, bones, blood vessels, and other organs and tissues.
What are the symptoms of Ehlers-Danlos Syndrome?
As mentioned above, there are 13 different types of EDS and it is therefore very unlikely that someone will have all of the aforementioned symptoms. Hypermobility is the most common symptom of EDS and the hypermobolity type is the most common type. In children this hypermobility can result in some developmental delay in children, such as sitting, standing, and walking. Chronic pain and dislocation is common in people with EDS. There is a type of EDS, arthrochalasia, where infants are born experiencing hypermobility and hip dislocations.
Another relatively common symptom is stretchy elastic skin that is velvety soft to the touch. There is also a tendency to bruise and potentially have some abnormal forms of scarring.
Some of the forms of EDS can have extremely serious consequences - vascular EDS can be fatal should any large vessel rupture - it can weaken the aorta, and also the walls of the uterus and intestine. People with vascular EDS would benefit from genetic counselling before considering starting a family.
The Mayo Clinic states the following:
"People who have vascular Ehlers-Danlos syndrome often share distinctive facial features of a thin nose, thin upper lip, small earlobes and prominent eyes. They also have thin, translucent skin that bruises very easily. In fair-skinned people, the underlying blood vessels are very visible through the skin."
How is Ehlers-Danlos diagnosed?
EDS is a genetic condition and there are around 20 identified genes that cause this condition.
Typically the stretchy skin, hypermobility, and family history are sufficient for a diagnosis. It can be fruitful to have a genetic test to identify the type of EDS a person has.
What is the Prevalence of EDS?
It is estimated to affect approximately 1 in 5000 people.
How did I get Ehlers-Danlos Syndrome?
As above, EDS is a genetic condition. That means it is an inherited condition.
Different forms of EDS have different likelihoods of inheritance.
Some are autosomal dominant genes, meaning that whichever of your parents have EDS you have a 50% chance of having the condition.
Some are autosomal recessive genes, meaning that both parents need to be carriers of the gene for there to be a 25% chance of having the condition.
Some people have de novo gene variants with no family history.
There is no cure so all interventions are designed to help manage the symptoms and prevent complications.
Typically people experiencing chronic pain may be on a cocktail of pain killers. Psychological pain management can also be a useful adjunctive to this. Some people may be diagnosed blood pressure medication to reduce pressure on the vessels. Physiotherapy is often offered, yet as EDS is a lifetime condition that never goes away, it's unlikely that the physiotherapy support will be totally sufficient.
People with EDS are likely to need some psychology input. Firstly, to help them process the difficulties they experienced prior to diagnosis. Then to support them to deal with the challenges of living with a long-term health condition. This might be available through the NHS, or from private providers (like me).
This was a quickly put together article that may not be of the highest quality, yet is hopefully informative enough to give pause for thought.
If one medic reads this and is able to identify EDS in one of their patients, mitigating the need for them to experience unnecessary trauma and disrespect, it would have been worth writing. If it helps a family member to recognise the symptoms in a loved-one and push for a diagnosis, it would have been worth writing.
My hope is that people with EDS can be treated with dignity and compassion going forward. Long-term conditions are challenging enough to live with, without having years of battling against disbelief and constant invalidation.
Between 2021 and 2022 8.3 million adults in the UK were prescribed an antidepressant (1) and 83.4 million prescriptions were written for antidepressants for adults. For children and adolescents almost 12,000 were prescribed antidepressants with 180,000 prescriptions written. Both increased from the previous year, adults by 5% and children by 8%.
What is the serotonin (5-HT) hypothesis of depression?
I am almost certain that most people are aware that a hypothesis exists that says people experience depression due to a chemical imbalance. This hypothesis originated almost 60 years ago and posited that a serotonin deficit in the brain caused depression (2). This hypothesis resulted in the development of drugs designed to improve uptake of serotonin to cure people from depression.
Has the serotonin hypothesis been proven?
The simple answer is, no. Actually, it has pretty much been disproven.
In 2022, Psychiatrist Joanna Moncrieff and her colleagues at University College London, and various other universities in the UK and abroad, published their umbrella review of reviews looking at the evidence for the serotonin hypothesis of depression and found that there was "no support for the hypothesis that depression is caused by lower serotonin activity or concentrations."
They did, however, find that long-term use of antidepressants may reduce serotonin concentration.
It really does beg the question: why are these drugs still being handed out so readily?
You can read the paper here: www.nature.com/articles/s41380-022-01661-0%3C, if you're interested.
IBS symptoms vary between individuals, some experiencing chronic IBS symptoms, others more mild. Some may experience symptoms worsening in certain situations, or after consuming certain foods. Others experience it for no identifiable reason.
Many experience abdominal pain, cramping, bloating, wind, and complex bowel habits (diarrhoea and/or constipation).
IBS is often diagnosis by elimination, yet the symptoms are similar to some very serious health conditions and it is always worth having symptoms checked out by your GP.
Hypnosis for IBS
In my practice I have used the North Carolina Protocol for IBS.
The North Carolina Protocol is a 7 week programme, delivered fortnightly, with a home-practice audio to listen to between sessions.
In their first study, the authors found that 17 out of 18 participants reported improvements in IBS symptoms - statistically significant improvements were noted in abdominal pain, bloating, and bowel functioning. IBS-related anxieties were also significantly reduced in this group.
In their second study, the authors found that 21 out of 24 participants reported improvements in the above, also noting a reduction in depression. Improvements were still noted at 10 month follow-up.
I have used this protocol with great success within my own private practice, and the author in his 2006 paper noted at the time that he had worked with 70 people in practise, enjoying success, noting that 80% of patients experience marked improvements in their IBS symptoms.
Hypnotherapy and Psychology are recommended for people who don't respond to pharmacological interventions by the National Institute for Health and Care Excellence (NICE).
In my previous microblog post on the power of visualisations, i talked about how it was demonstrated that visualising sinking a basketball in the hoop can be almost as effective as actual physical practice.
In this microblog post I'm going to mention a study from 2013 where the researchers took 18 young and healthy participants and randomly assigned them to one of three conditions:
1 - Internal motor imagery
2 - External motor imagery
3 - Control group (no practice)
So, what is the difference between internal and external motor imagery?
The internal motor imagery group imagined themselves actually doing the exercise - they were asked to visualise and imagine the feeling of physically engaging in elbow flexion contraction (i think it's like a bicep curl?). Apparently, some participants even imagined putting their arms under a table and trying hard to mentally lift the table.
The external motor imagery group imagined themselves actually doing the exercise, yet saw this happening from a third person perspective. Not through their own eyes.
The training sessions lasted 15 minutes, 5 days a week, for 6 weeks.
Not surprisingly, those in the control arm of the study experienced no change.
Every single participant in the internal motor imagery group experienced clinically meaningful strength gains (a medium effect size), whereas only 50% of those in the external motor imagery group experienced similar.
This small study demonstrates how powerful the use of mental imagery can be. With the use of visualisation significantly improving voluntary muscle strength. The authors suggest that the findings hint towards a stronger reinforcement in the neural circuitary that controls the signals to the corresponding muscle when the someone visualises through their own eyes, rather than from a dissociated perspective.
It is quite impressive to think that we could, potentially, increase our physical strength by 10.8%, just by imagining ourselves exercising muscles for 6 weeks.
Visualising outcomes may seem a little new age, some people may deem it nonsensical, and others wholly onboard with the concept.
In this brief post I want to discuss how visualisations can impact us, physically. This can then lead into a later post about how we can use some of these techniques to help us in other ways.
In his 1958 dissertation, as part of his thesis for a doctorate in education, L Verdelle Clark, reminisced on his physical educator, Chiltern Kemp, who incorporated mental imagery into his training programmes for his students playing basketball. This influenced L Verdelle Clark to such a degree that he dedicated a chunk of his doctoral thesis to the study of mental imagery in sports learning. In his research he recruited students from US Schools, in Detroit. He had one group physically practicing 5 warmup shots, then 25 shots to score. Another mentally rehearsed 5 warmup shots, then mentally took 25 shots for a score. They repeated this for four days, on the fifth day both groups took 25 warmup shots, and 25 shots for a score. The findings demonstrated that there's only a 1% difference in improvement between the physical practice group and the mental rehearsal group (the physical group improved by 16%, the mental rehearsal group, 15%). The mental rehearsal group was also shown to demonstrate a statistically significant improvement in arm strength during the course of the experiment.
This really demonstrates how visualisation and incorporating mental imagery can be a way to success for anyone wanting to improve or develop skills.
Hypnosis is a phenomenon that has been shrouded in mystery and skepticism for many years. Despite its widespread use in clinical settings for a variety of purposes, including pain management, smoking cessation, and anxiety reduction, there are still many people who remain skeptical about its effectiveness. However, scientific research has provided a wealth of evidence to support the use of hypnosis as a valuable tool in the field of medicine and psychology.
One of the most compelling pieces of evidence for hypnosis is the large number of studies that have found it to be an effective treatment for chronic pain. In fact, a 2018 meta-analysis of 85 studies on hypnosis and pain found that hypnosis was significantly more effective at reducing pain than no treatment at all, and was as effective as other forms of pain management such as cognitive-behavioral therapy and relaxation techniques.
In addition to pain management, hypnosis has also been found to be effective in treating a variety of psychological conditions. For example, a 2007 meta-analysis of 18 studies on hypnosis and anxiety found that hypnosis was significantly more effective at reducing anxiety than no treatment at all, and was as effective as other forms of anxiety treatment such as cognitive-behavioral therapy and medication.
Another area in which hypnosis has shown promise is in helping people quit smoking. A 2018 systematic review of 14 studies on hypnosis and smoking cessation found that hypnosis was more effective than no treatment at all, and was as effective as other forms of smoking cessation treatment such as nicotine replacement therapy and cognitive-behavioral therapy.
One of the reasons that hypnosis is so effective is that it allows people to tap into their subconscious mind and make changes at a deeper level than traditional talk therapy or medication. By entering a state of heightened suggestibility, people are able to access parts of their mind that are not accessible in a waking state, which can lead to powerful insights and changes in behavior.
Of course, like any treatment modality, hypnosis is not a panacea and is not effective for everyone. However, the wealth of scientific evidence for its effectiveness in treating a wide range of conditions should give skeptics pause and encourage more widespread use of hypnosis in clinical settings.
In conclusion, the scientific evidence for hypnosis is strong and growing, with numerous studies showing its effectiveness in treating chronic pain, anxiety, and smoking cessation, among other conditions. While more research is needed to fully understand the mechanisms behind hypnosis, its ability to access the subconscious mind and facilitate powerful changes in behavior make it a valuable tool in the field of medicine and psychology.
I am Dr Tim Mahy, also simply known as "Tim". I changed careers in my 20s, shifting from the world of Offshore finance, to that of Psychology (with 7 years of university to bridge the gap).