Delayed diagnosis in myelopathy, common to many neurological diseases
Delayed diagnosis in myelopathy, common to many neurological diseases
By Max Butler Edited by Ben Davies
Delayed diagnosis is a major issue for myelopathy patients (Davies et al, 2018) as delays can be distressing for sufferers, and the condition is likely to worsen without treatment. On top of this, surgical treatment becomes less effective the longer the delay (Tetreault et al., 2013). However, these experiences are not unique to myelopathy.
The 2018/19 National Neurological Patient Experience Survey shows that diagnostic delays are the norm for many with neurological diseases. These findings suggest a need for large-scale change in how neurological conditions are approached on the ‘front-line’ of care.
Why was this study conducted?
The survey, run by The Neurological Alliance, asks patients with neurological diseases
about their experiences. It covers a broad range of topics, such as diagnosis,
communication, hospital care, support for mental wellbeing, and access to social care,
welfare and employment. It is an important tool for establishing the quality of
neurological care in England, and for providing an evidence-base for the need for
improvement.
How was the study conducted?
A questionnaire was completed by patients online and in neurology clinics between
October 2018 and March 2019. 10,339 patients responded to the survey, making it the
largest ever survey of people with neurological conditions in England. Previous surveys
were taken in 2014 and 2016, but this is the first time this survey has been conducted in
clinics, meaning a greater number of patients could be reached. It is also the first-time
regional differences in care have been studied.
What was discovered?
The survey shows many patients with neurological conditions are experiencing large
delays in referral to a neurologist, and therefore in diagnosis and treatment. Some key facts from the survey:
- 39% of survey respondents reported that they saw their GP five or more times
before being told they needed to see a neurologist - 29% of survey respondents who needed to see a neurologist waited more than
12 months (from first seeing the GP) - Over a fifth (21%) waited over 12 months for a confirmed and accurate diagnosis, after their first visit to a neurologist.
- Over half (55%) of respondents said they have experienced delays in accessing
healthcare in general - The survey also found wide regional variation in waiting times. The longest waits are experienced by people with neurological conditions living in the most deprived areas.
Why is this important?
The survey shows that delays to diagnosis are experienced by many patients with
neurological diseases, suggesting a need for change.
As patients are visiting the GP multiple times before diagnosis, clinician training
focussed on neurological diseases may be needed. Indeed, research carried out by The Neurological Alliance in 2016 showed 84% of GP respondents felt they could benefit from further training on identifying and managing people presenting with neurological conditions. The survey also revealed inequalities in the services provided, suggesting a ‘post-code’ lottery in the care neurological patients receive.
The Neurological Alliance, in response to the survey, has said that a National Plan for Neurology in England must be urgently developed to address the range of problems found. The Neurological Alliance is also encouraging people to write to their MP about these important issues.
Further information can be found in Neuro-Patience, which presents the findings of the 2018/19 National Neurology Patient Experience Survey.
References
- Davies, B.M., Mowforth, O.D., Smith, E.K., and Kotter, M.R. (2018).
Degenerative cervical myelopathy. BMJ 360, k186. - Tetreault LA, Kopjar B, Vaccaro A, Yoon ST, Arnold PM, Massicotte
EM, Fehlings MG. (2013). A clinical prediction model to determine outcomes in
patients with cervical spondylotic myelopathy undergoing surgical treatment: data from the prospective, multi-center AOSpine North America study. J Bone Joint Surg Am. 18;95(18):1659-66.
Myelopathy.org brings leading spine surgeons together
May 7th was a momentous day for Myelopathy.org, with not one but two landmark events occurring on the same day!
In the morning, Dr Kotter was proud to host the inaugural UK Academic Spine Symposium, Professor Peter Hutchinson (Professor of Neurosurgery, University of Cambridge) at the Royal Society of Medicine, London. This brought together representatives from the UK’s current spinal surgery research programmes, including the FORVAD trial, the NERVES trial and the GIRFT National Report.
And of course, Myelopathy was well represented with both Dr Mark Kotter and Dr Ben Davies outlining two of Myelopathy.org’s very own international research projects. First, Dr Davies discussed RECODE-DCM, a major consensus process which aims to establish a standard definition of DCM, determine the most pressing research questions in DCM and improve the consistency of DCM research. Secondly, Dr Mark Kotter gave an exciting update on RECEDE-Myelopathy – the first ever regenerative medicine trial for DCM.
In partnership with MediciNova, RECEDE-Myelopathy will trial the use of promising drug ibudilast for promoting spinal cord repair in myelopathy patients.
A successful result would represent a revolution in myelopathy care – the chance to not just stop deterioration of the condition, but potentially restore function.
The event was closed with a keynote lecture from one of the world’s most eminent spinal surgeons Professor Michael G Fehlings (University of Toronto) on the importance of DCM as a disease and the potential future directions of treatment and research. We are of course delighted that Professor Fehling’s has accepted the role of Chair Scientific Advisor Panel to Myelopathy.org.
Professional education will be an important part of optimising DCM care. We hope that this event was an important early stem, and we look forward to next year!
Myelopathy.org officially launches
Fresh from the success of the symposium, the Myelopathy.org team rushed across London the House of Lords. Here they began to prepare for the main event: the official launch of Myelopathy.org.
While Myelopathy.org has been registered as charity since June 2018 (although the important groundwork was occurring much earlier), May 7th marked our official launch to the public and professional worlds. We had the great privilege of being hosted by the Lord Patrick and Lady Carter of Coles. Lady Julia Carter is a DCM sufferer herself, a trustee of Myelopathy.org and an inspiring champion for myelopathy suffers everywhere. She and Lord Carter welcomed clinicians, journalists, politicians and patients to one of the House’s oldest and most beautiful function rooms, complete with a stunning view of the Thames. Here they learned about the underrepresented problem of DCM and of our efforts to tackle it.
After welcome drinks, the launch evening got into full swing. Lord Carter delivered a warming introduction and we were once again honoured to hear from Professor Michael Fehlings, one of the world’s most famous spine surgeons and mentor to our very own Dr Kotter. Prof Fehlings made a riveting case for the importance of educating the public about myelopathy which captured the audience, ready for Dr Kotter to explain his own journey, from the myelopathy patient whose plight first inspired him through to the founding of Myeloapthy.org. It was then our great pleasure to welcome Dr Yuichi Iwaki, founder and president of MediciNova, who are working alongside Dr Kotter in the first ever regenerative medicine trial in DCM. It was also our singular privilege to be joined by Mr Koji Tsuruoka, Ambassador of Japan to the United Kingdom. Ambassador Tsuruoka expressed his pride in the work of MediciNova set up by a Japanese team and based in California and explained how he saw their collaboration in the RECEDE trial as a landmark initiative that combines the best of Japanese and British strengths. We at Myelopathy.org wholeheartedly agree.
Most importantly, we heard from those with the greatest stake of all in myelopathy: sufferers with myelopathy. With considerable courage, Ms Shirley Widdop described her struggle following her DCM diagnosis in 2012. Shirley explained how the discovery of Myelopathy.org and the Myelopathy Support Facebook Group had lessened her feelings of isolation as a myelopathy sufferer. Indeed, she is now a vital part of both initiatives. Mr Iwan Sadler then described his experiences of life with DCM and his fantastic efforts in founding the original Myelopathy Support group (with undue modesty!) We have no doubt that Shirley and Iwan’s moving speeches simultaneously showed the grave reality of myelopathy to our guests, but also demonstrated how a supportive community of patients and clinicians can transform the experience of suffering from DCM. We are incredibly proud to have such able ambassadors for the cause of myelopathy.
The evening continued with many stimulating conversations between members of the Myelopathy.org team and our esteemed guests. Lead by Dr Oliver Mowforth, the Student Society were out in force to represent the next generation of clinicians and scientists who will be joining the fight against myelopathy. As the launch wound down we all felt that our guests showed a heartening interest in DCM and the future challenges facing us as patients and clinicians. We are sure that the message of myelopathy will spread far and wide after the success of the launch – awareness of myelopathy has never been higher. As a charity we are thrilled to be officially up and running and cannot wait to see where the next years take us.
All of us at myelopathy.org would like to express a particular vote of thanks to Dr Michelle Starkey and Dr Gemma Wise, without whose tireless work neither the Academic Spine Symposium nor launch would have been possible
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- Photo courtesy of Toby Roney
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- Photo courtesy of Toby Roney
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- Photo courtesy of Toby Roney
UK-Based Benefit Support for those with Degenerative Cervical Myelopathy (DCM)
In this blog we cover the financial burden that a chronic condition such as myelopathy can bring.
This week we speak to Shirley Widdop, an ex-Nurse that had to give up employment after being diagnosed with Cervical Myelopathy in 2012. Shirley is a very active member and an admin for myelopathy.org Facebook support group, Myelopathy Support, and has assisted a number of members that have found themselves in the same situation and helped them through the tangled web of the UK benefits system.
Shirley explains that living with DCM is life altering in many ways. A major concern for people that have been diagnosed with myelopathy or any similar chronic condition, is that not only do you have to deal with the challenges of living with chronic illness & disability, but you also have to look at the financial implications that it also brings.
When diagnosed, I was working part-time as a Home Help. However, it became physically impossible due to pain, fatigue & deterioration in symptoms.
I received Statutory Sick Pay, but, eventually, was obliged to apply for Employment Support Allowance (ESA). I was placed in the Work Related Activity Group (WRAG) after surgery, even though I was still recovering & the DCM had not resolved.
I was unaware I was entitled to anything else until informed by a concerned employment advisor about eligibility for the ESA Support Group and also Disability Living Allowance (DLA) (now known as Personal Independence Payment – PIP).
Both applications were denied by the Department of Work & Pensions, but, thankfully, I won on appeal. Being awarded DLA enabled access to other financial support of which I was also unaware.
Consequently, sharing such information is my passion. Dealing with DCM is difficult enough without worrying about finances. And because of this we are now putting together a benefit information section that can be found under the support section at myelopathy.org.
But we need your help. Despite being a very cosmopolitan group, benefit information for our international members is sadly lacking. Please help us to rectify this so all our members have access to the financial support they need. Thank you.
Disability Benefits / Advice UK
- Attendance Allowance – a disability allowance for those with long term illness &/or disability aged 65 year or over www.gov.uk/attendance-allowance/overview
- Benefits & Work – advice for claiming what you may be entitled to www.benefitsandwork.co.uk
- Cold Weather Payment – for people in receipt of eligible benefits who receive a payment if the average temperature in their area is recorded as, or forecast to be, zero degrees Celsius or below for 7 consecutive days www.gov.uk/cold-weather-payment/overview
- Carer’s Allowance financial help for those helping to care for you at least 35 hours per week www.gov.uk/carers-allowance/overview
- Citizens Advice Bureaux – advice about how to claim and assistance available to claim, specific to which part of the UK you live in www.citizensadvice.org.uk
- Disabled Facilities Grant – a grant to help you convert your home if in need of adaptations www.gov.uk/disabled-facilities-grants/overview
- Disability Rights UK – loads of factsheets and advice to download & peruse at you leisure www.disabilityrightsuk.org
- Disabled Students’ Allowance – advice for those who need help whilst studying www.gov.uk/disabled-students-allowances-dsas/overview
- Employment Support Allowance (ESA) – financial support if you are unable to work due to long term ill-health &/or disability www.gov.uk/employment-support-allowance/overview
- HOLD – Home Ownership for People with Long-term Disabilities – help and advice for those who wish to purchase their own home www.ownyourhome.gov.uk/scheme/hold
- Medical Exemption Certificates – access to free prescriptions for those with long term health conditions, primarily: permanent fistulae; hypoadrenalism (for example, Addison’s Disease); diabetes insipidus and other forms of hypopituitarism; diabetes mellitus, except where treatment is by diet alone; hypoparathyroidism; myasthenia gravis; myxoedema (that is, hypothyroidism which needs thyroid hormone replacement); epilepsy which needs continuous anticonvulsive therapy; a continuing physical disability which means you cannot go out without the help of another person; or cancer and are undergoing treatment for: cancer; the effects of cancer or the effects of cancer treatment. Apply for a certificate via your GP or Consultant – ask for a FP92A form. More information available at www.nhsbsa.nhs.uk/1126.aspx
- Personal Independence Payment – financial support for the extra costs that having a long term illness &/or disability whether working or not, for those aged 16 – 64 years www.gov.uk/pip/overview
- Prescription Prepayment Certificate – helps to spread the cost of prescription charges for those needing multiple items but not eligible for free prescriptions apps.nhsbsa.nhs.uk/ppcwebsales/patient.do
- Turn 2 Us – national charity helping people to check their benefit entitlements & source other financial help & grants they may be eligible for www.turn2us.org.uk
- Warm Home Discount Scheme – a yearly scheme that can help save £140 off the cost of your electricity bill if eligible from participating suppliers www.gov.uk/the-warm-home-discountscheme/what-youll-get
- Watersure Scheme – help for eligible people to pay their water bills, namely those on benefits, those who need to use a lot of water either for medical reasons or because their household has a certain number of school-age children. You also need to be on a water meter or be waiting to have one installed. Apply directly via your regional supplier. More information at www.citizensadvice.org.uk/consumer/water/water-supply/problems-with-paying-yourwater-bill/watersure-scheme-help-with-paying-water-bills/
- Watersure Wales – as above for customers of Welsh Water but you don’t have to be on a meter. More information at www.citizensadvice.org.uk/consumer/water/water-supply/problemswith-paying-your-water-bill/watersure-scheme-help-with-paying-water-bills/
- Winter Fuel Payment – a yearly scheme for eligible individuals to receive between £100 and £300 tax-free to help pay for heating bills if they were born on or before 5 May 1953 (this date changes each year) www.gov.uk/winter-fuel-payment/overview
Information kindly collated and presented by Shirley Widdop on February 2018.
NOTE
Although Myelopathy Support aims to be a reliable source of information, we cannot accept any responsibility for the information provided. We also do not assume any responsibility for the use or content of any product or service
mentioned. Myelopathy.org is not responsible for any third-party content referenced, displayed or linked to or on the Myelopathy.org internet site. The inclusion of any link does not imply endorsement by Myelopathy.org of the site. Use of any such linked website is at the user’s own risk.
Myelopathy Increases Inflammation¹
Why was this study conducted?
Edited by BM Davies
Previous research¹ has demonstrated that patients with cervical myelopathy undergo an immune response. Additionally, proinflammatory proteins, called cytokines, are more present in cerebrospinal fluid in patients with cervical myelopathy and low back degenerative disc disease. Therefore, it is possible that some of these cytokines may be able to serve as blood markers of severity of cervical myelopathy.
How was the study conducted?
This was a comprehensive study involving both humans and animals to help investigate their research question.
In humans: Blood was collected from 40 patients with cervical myelopathy before surgery, 10 controls without myelopathy, and another group of 10 patients with myelopathy to serve as a validation group. From this blood they analyzed the presence of 4 cytokines.
In rats: These cytokines are also compared between healthy rats, and rats in which cervical myelopathy was recreated. The researchers also went on to administer a large dose of one of the cytokines (interleukin-6) in rats who did not have compression, so see what would happen. They looked at amount of motor function, pain sensitivity, tissue damage, and cytokine levels in the rats.
What was discovered?
Of the 4 cytokines examined, patients with cervical myelopathy had an increased concentration of interleukin-6 only. This was found in both groups of patients with cervical myelopathy. Interleukin-6 was moderately associated with mJOA scores and body mass index but not age or symptom duration. While interleukin-6 levels were higher than controls, they still were in the range of what is clinically considered “normal” suggesting that it was elevated but not THAT elevated.
Additionally, rats that had experimental compression of their cervical spinal cord had elevated levels of interleukin-6 in both their blood and cerebrospinal fluid. They also had lower motor function scores than rats without compression, increased pain sensitivity, and spinal cord damage. Interestingly, the rats that had an experimental dose of interleukin-6 had similar motor scores, pain sensitivity, and spinal cord damage to the rats with compression.
Why is this important?
This study importantly expands our knowledge of the disease process in patients with cervical myelopathy. Since the blood interleukin-6 levels were still in the “normal”, it may not be the best marker for diagnosing the disease, but it appears it could serve as an indicator of severity of the condition. It is also important because the study was done in a way that we can have substantial confidence that what they found was real. Science has a problem lately with being unable to replicate findings.² This study, on the other hand, replicated their own findings in humans and an animal model of cervical myelopathy.
Overall, this study highlights that inflammation may be an important component of cervical myelopathy, and therefore by extension anti-inflammatory therapy could have potential. There is still a lot more we need to explore with that though as some anti-inflammatory medicines can impair healing after a cervical fusion. Therefore, patients with cervical myelopathy shouldn’t start an anti-inflammatory regimen without consulting their surgeon!
Questions for discussion:
1. Have you noticed any benefits in motor function such as walking, grip, or balance while on anti-inflammatories?
Let us know in the comments!
References
1. Du S, Sun Y, Zhao B. Interleukin-6 Serum Levels Are Elevated in Individuals with Degenerative Cervical Myelopathy and Are Correlated with Symptom Severity. In: Med Sci Monit. Vol 24.2018:7405-7413.
2. Baker M. 1,500 scientists lift the lid on reproducibility. Nature News. 2016;533(7604):452.
A new way to detect myelopathy?
Edited by B. Davies
WHO: Researchers at the University of Southern California have conducted some exciting new myelopathy research
WHAT: The researchers have developed and validated a screening test for myelopathy
WHY: In medicine there are 2 types of tests: screening tests and diagnostic tests. Screening tests tend to be quick, safe, require few resources and are appropriate to use on a very large scale, for example all people at risk of having a particular medical condition who may not have any symptoms Diagnostic tests tend to be more complicated, more expensive, most time-intensive and have great risks for patients. Screening tests are ideal for picking up disease in people without any symptoms to catch things early. People who have positive test results are then referred on for further diagnostic testing to confirm whether they have the particular medical condition. Diagnostic screening then, is used in people who we have a high suspicion might have a disease, either because they have a positive screening test of because they have symptoms.
Getting back to myelopathy, there are currently very effective diagnostic tests, based on a combination of a doctor’s history taking, physical examination and an MRI scan. However, there are currently no screening tests for myelopathy. Putting this in the context of the subtle symptoms of myelopathy (Davies et al., 2018), the fact that myelopathy is currently being diagnosed too slowly (Behrbalk et al., 2013), and the duration of symptoms before diagnosis are thought to be the most important factor determining how well patients get on in the long-term after surgery (Ebersold et al., 1995), a myelopathy screening test sounds a brilliant idea!
Developing and testing such a screening test is exactly what the researchers have done!
HOW: The researchers developed a 4-question test based upon previous research and their experience of the most common DCM symptoms. The test involves asking the patient each of the four questions. The four questions are:
1. Have you noticed that you are dropping things or that your hands feel clumsy?
2. Have you felt more off-balance or unsteady on your feet?
3. Do you feel weakness in one or both of your arms or hands?
4. Do you feel numbness or tingling in one or both of your arms or hands?
The researchers called the test the DOWN test (see words in bold). If the patient answered yes to a question this was called a positive answer and if they answer no this was called a negative answer.
The researchers then asked the questions to 46 myelopathy patients and 46 patients who did not have myelopathy. This study design is called a case-control study.
FINDINGS
The researchers experimented trying different combinations of how many responses to the DOWN questionnaire had to be positive to define a positive overall test result. There are various measures that can be used for this. Bear in mind that with any test there is always the risk that the result might be positive because a patient has another medical condition, or due to chance, rather than the medical condition that the researchers are interested in. Therefore, researchers use a combination of statistical measurers to check how good a test is. One measure is called sensitivity, and this tells researchers how good a test is at identifying people with a particular medical condition, for example myelopathy. Another measure is specificity, which tells researchers how likely a positive result is to be because of myelopathy rather than being positive because of another medical condition or due to chance.
So, a test might be very sensitive because it is positive for nearly all myelopathy patients but at the same time not be very specific because it is also positive for many patients with other medical conditions. This would mean that we could be reasonably sure that someone doesn’t have myelopathy if they have a negative test but if they have a positive test, we cannot be sure whether they have myelopathy or another medical condition, or no condition at all.
Ultimately there is a trade-off between sensitivity and specificity – the better you make a test at identifying all cases of a particular medical condition (increasing the sensitivity) the better it becomes at identifying people with other medical conditions (decreasing the specificity). High sensitivity is desirable in a screening test to act like a net to catch as many patients as possible who have myelopathy. We can then use other tests to rule out those who do not have it later. However, this approach is not without problems, especially as it will inevitably involve a lot of unnecessary anxiety for patients with positive screening tests who later turn out not to have the condition after all.
In the end, the researchers recommended using cut-off of 3 positive answers to define an overall positive test result, meaning a patient is likely to have myelopathy.
Researchers found that patients with myelopathy had higher DOWN scores than those without myelopathy and that patients with 3 or 4 positive responses were significantly more likely to have myelopathy. They found that 91% of patients who had 3 positive questions had myelopathy. They showed that the DOWN screening test is accurate identifying patients with myelopathy.
SO WHAT?: Myelopathy is very difficult to diagnose early. Most patients present with subtle symptoms to general practitioners, who have very broad medical knowledge but do not have the same expertise in myelopathy as spinal surgeons. The development of the DOWN screening test has great promise to screen patients, facilitate earlier diagnosis, and reduce suffering for patients. Increasing age is a risk factor for myelopathy, which is predicted to become commoner with ageing population. This makes all the more need for a test like the DOWN test.
NEXT STEPS: the current study was conducted on a relatively small number of patients who were part of a very well-defined group attending a specialist spinal service. Given that the DOWN test will be used mainly by general practitioners on the general population, a follow up study is needed to check the results in a larger and more diverse group of patients. It may also be worth studying whether using different questions can improve the test.
References
Behrbalk, E., Salame, K., Regev, G.J., Keynan, O., Boszczyk, B., and Lidar, Z. (2013). Delayed diagnosis of cervical spondylotic myelopathy by primary care physicians. Neurosurg. Focus 35, E1.
Davies, B.M., Mowforth, O.D., Smith, E.K., and Kotter, M.R. (2018). Degenerative cervical myelopathy. BMJ 360, k186.
Ebersold, M.J., Pare, M.C., and Quast, L.M. (1995). Surgical treatment for cervical spondylitic myelopathy. J. Neurosurg. 82, 745–751.
A new audience for Myelopathy.org
Awareness of myelopathy among non-specialist doctors is not as good as it should be. This fact is at least partly to blame for many patients being misdiagnosed, diagnosed too late or not diagnosed at all. This must change.
At the beginning of September 2018, we launched a Myelopathy.org Student Society. The aim of this new part of Myelopathy.org is to target current medical students, who are the doctors of tomorrow.
Our society aims to improve myelopathy education in UK medical schools, to raise awareness of myelopathy and to get students and doctors interested in and enthusiastic about myelopathy!
So far we have hosted several academic talks in the School of Clinical Medicine, University of Cambridge. Highlights from our first term include an inspiring talk on neurosurgical careers from Peter Hutchinson, Professor of Neurosurgery in Cambridge and a fascinating talk from Consultant Neurologist Dr Sybil Stacpoole on spinal disorders for medical students, which included a wealth of interesting real cases, including myelopathy. Our talks have been very popular with attendance averaging over 50 students and junior doctors per talk!
We have established two annual Myelopathy.org student awards: an essay award and a research award. These are open to all UK medical students. We are excited about the interest and enthusiasm these awards will stimulate in myelopathy.
We have been successful in securing generous sponsorship from several corporate sponsors. Doctors Academy have provided us with refreshments for our events and prizes for our national awards; JP Medical and Pastest provided us with prizes for our national awards; generous funding donations have been made by Wesleyan and the Medical Defence Union. We are incredibly grateful for the generosity of all our sponsors and so excited by the interest in Myelopathy from these significant medical companies!
Finally, we are leading a national myelopathy research study and are delighted that to have recently received ethical approval and insurance to commence in the next few weeks. More information to follow later this year!
Please look out for our upcoming updates on our section of Myelopathy.org, like and follow us on our Facebook Page and keep up to date with our upcoming activities. You don’t have to be a medical student to join in!
Ageing increases impact of spinal cord compression
FEM (Finite Element Method) analyses the impact of mechanical loads e.g. ‘stress’. It was principally used in engineering (for example aerospace), but increasingly also medical research
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At the moment, we do not have medical investigations which are able to represent accurately the significance of spinal cord injury. For example, you could have two patients with exactly the same MRI changes, one who is without symptoms and the other who is severely affected.
This is a major challenge for researchers, with many exploring new tools to provide better assessment methods. However, amongst this confusion, age seems to be important as the number of people with symptomatic cord compression increases with age. Moreover, some have shown that age can affect response to surgery. |
Of course this experiment has not been conducted on human spinal cords, but the findings are in keeping with a wider experience of aging and CSM and is a further reminder of the need for more sophisticated tools to represent the extent of spinal cord injury in CSM.
Reference
Addressing recent concerns about Myelopathy.org and affiliated surveys
A message from the director
As you are only too aware, Myelopathy is a condition which faces a number of significant challenges including lifelong disability, widespread misunderstanding and under-recognition, and a lack of clear information or support. Myelopathy.org was founded to address these issues and become a rallying point for change.
We see research as an important part of delivering change and support projects that can advance our understanding. As the largest ever Myelopathy community, your shared experiences have a lot to offer researchers, and therefore health surveys have been a prominent part of our research arm. So far, more than 2000 people have shared their experiences, making these some of the largest ever studies in Myelopathy. That data is still being processed, and we look forward to seeing the results soon, but this in itself is a testament to what we can achieve together.
As an organisation we recognise the power of this community and are committed to its responsible management. In this respect, all research associations and projects have been and are expected to meet our ethical standards. This includes adhering to our code of conduct, providing appropriate regulatory approval and practicing safe management of personal data. All proposed surveys are first piloted and approved internally.
Looking through our research section today, I can see that this oversight is not as explicit as it should be, and we will be introducing clearer documentation to correct this.
We are a very young organisation, developing and learning as we go along but in a short time we have made great in roads; I remember when we first launched, canine myelopathy was the prominent feature of google search results, but now our myelopathy has come to the forefront.
There is still a long way to go, but it will be together that we can drive change and not as individuals. The internet has provided a platform for us to come together, but we must remember that it can also have the potential to divide us: both as an organisation and as individual members we all must act responsibly. In that regard, if you feel any of our actions or the actions of our members questionable, please get in touch directly.
Thank you for your ongoing support.
Benjamin Davies
Director Myelopathy.org
Headaches more common in CSM
Cervical spondylosis, more than a pain in the neck?
by J.Hamilton
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For some migraines is just another word for headache, but in medicine it refers to a specific type of headache characterised by severe head pain that can last from 2-72 hours, are a common disorder and can be incapacitating to people who suffer them. Migraines are common, with estimates suggesting up to one billion people are affected worldwide. Various triggers may cause migraines, causing a sequence of events that lead to head pain. It has been suggested that cervical spondylosis, the degeneration of the bones of the neck, may initiate migraines, but little research has been done on the topic.
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How was it done?
Do you suffer from headaches or pain and have CSM?
Researchers from the University of Cambridge what to hear about your experience
What were the results?
How could this happen?
What does this mean for Myelopathy sufferers?
In the meantime, some small things that can minimize your risk of migraine include: remain well hydrated, reducing your caffeine intake (although some people find caffeine helpful), as well as ensuring a regular sleeping habit.
Investigating exercise after anterior cervical discectomy: what should we advise?
Can you help researchers from the University of Nottingham?
I plan to undertake a qualitative project interviewing approximately 8-16 participants to find out whether they have returned to at least 2 hours of exercise a day following the surgery. I would like to know whether they developed problems such as neck pain or pain or loss of function of the arms and legs with exercise.
Being a GP, I hope I can interpret the interviews and help people who require advice on getting fit after surgery.
Please have a look at my advert and get in touch if you would like to be involved.
Dr Teena Fernandez
MBBS MRCGP DFFP DRCOG BMEDSCI PGCE
Why does this matter? A word from the director
Worried about participating in research?
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