Happy Anniversary Myelopathy.org!
Happy Anniversary Myelopathy.org!
Today marks the first anniversary of our official charity launch at the House of Lords. This was a great milestone in the myelopathy.org journey and one I will never forget and which I will cherish forever.
Cervical myelopathy is a condition that is truly life-changing in so many ways both physically and mentally. I was devastated after my diagnosis in 2014 and being told my whole life was about to change. Looking back I could never have imagined the journey I was about to embark on. I have met so many remarkable people since 2014 who I’m now proud to call my friends.
The feeling of devastation after my diagnosis with cervical myelopathy slowly relinquished as I sat at my laptop thinking of ways to raise awareness of this overlooked condition. Slowly but steadily I worked on my Facebook campaign as the constant pain meant I was limited in how much time I could spend on my laptop. Finally, I launched the first Facebook community page for cervical myelopathy and slowly it gathered likes and followers. One follower in particular (Dr Benjamin Davies from the University of Cambridge) led to the start of the amazing collaboration with myelopathy.org. Ben asked me to share my story on the newly launched myelopathy.org website which he had set up with Dr Mark Kotter and after some consideration I finally agreed.
A few months after my surgery I finally met up with Mark and Ben at their Cervical Myelopathy Day in Cambridge. We immediately hit it off and not long after we decided to work together to raise awareness of cervical myelopathy and to make a positive difference to people with the condition. Our online presence grew and the positive feedback drove our passion to create more and more content for the site.
The last five years have seen us go from strength to strength and in 2018 with the help of our new team member Dr Michelle Starkey myelopathy.org registered as a charity in the UK. Myelopathy.org became the first worldwide charity for cervical myelopathy. Since our official launch last May three new trustees have joined the board and the charity has partnered with AO Spine and the James Lind Alliance to establish a research project, RECODE DCM. Health professionals and people living with cervical myelopathy from around the world came together in New York in November 2019 to establish the top ten research priorities for cervical myelopathy research.
We have a long road ahead of us but with the team of volunteers that we are lucky enough to have we can truly make a difference.
Stay safe!
A Message from Everyone at Myelopathy.org
We are living in unprecedented times which is making many of us feel quite scared, nervous and anxious about our health as well as that of our families and friends.
We wanted to reassure you that Myelopathy.org is run by a dedicated group of volunteers based all around the UK and therefore we are used to working with each other remotely. This means that during these uncertain times we can continue to work together in the way we are used to around our various family and other commitments, to raise awareness of Cervical Myelopathy. That said, due to the current situation many of these activities will likely slow in the weeks and months to come, or will be postponed.
In the meantime, keep talking to each other on our support group, keep in touch with your family, friends and neighbours, and lean on them for help and support. Stay positive, and try to meet people for a virtual cup of tea online instead. Please don’t suffer in silence, we’re here for you.
If there is a question we can help with, get in touch and we will try to seek some clarity for you.
Stay safe, with very best wishes,
Everyone at Myelopathy.org
Updated Information on Coronavirus (COVID-19)
THIS SUMMARY IS SUBJECT TO CHANGE AT SHORT NOTICE AS THE GOVERNMENT RELEASES ITS OWN UPDATES – THIS SUMMARY WAS LAST UPDATED MONDAY 23RD MARCH 2020
Dear Friends,
These are extraordinary times; coronavirus (COVID-19) represents a nearly unprecedented challenge to our healthcare systems and a danger to all of us.
An important question that we need to contemplate is how will coronavirus (COVID-19) affect individuals with Cervical Myelopathy?
At the moment, there is no data related to coronavirus (COVID-19) and Cervical Myelopathy. The latest Public Health England guidance states that, in addition to people over 70, anyone with a chronic neurological condition is at increased risk of a severe illness from coronavirus (COVID-19).
I think we need to err on the side of caution and consider individuals with Cervical Myelopathy to potentially be at an increased risk. I therefore urge you to read and follow the latest advice and guidance published in your home countries.
The UK Government and the NHS provides comprehensive information relating to the coronavirus (COVID-19) outbreak and in particular is urging any individual in a group which is identified as being at increased risk of a severe illness from coronavirus (COVID-19) to follow the social distancing advice. In addition, the US Centre of Disease Control provides the following guidance for people at increased risk which you may find useful.
Our primary concern is everyone’s health and well-being. We understand that there is a lot of uncertainty at the moment and that this can be unsettling. We will provide as much information as we can, as soon as we can.
Our staff are working from home so please do get in touch via email or on our Facebook Support Group. We are continuing to work to support the Cervical Myelopathy community in these challenging times.
Stay safe and we will be in touch again with further updates.
With best wishes,
Dr Mark Kotter (Founder of Myelopathy.org)
Meditation and Myelopathy
Slowly my myelopathy symptoms increased day by day and it quickly came to the point where I developed a new muscular twitch or nagging pain daily. I wasn’t getting much luck with my pain relief and when I had a terrible day, which was nearly every day pre-operative, there was no other option but to increase my assortment of medication. This left me feeling like a walking zombie on autopilot with a terrible brain fog. I couldn’t think straight, let alone perform the simplest of tasks which, left me confined to the house more often than not.
Trying to find a comfortable position to be in got harder too as sitting upright for a long time without my head supported was quickly becoming an impossible task. One afternoon I went upstairs, placed my cervical pillow on the bed and laid down. I had recently bought a phone/tablet holder, the type that you attach to the bed, as I wasn’t be able to hold my phone or tablet without my arms and hands giving way and the device suddenly face planting me! Holding anything which incorporated the use of my neck and shoulder muscles resulted in a muscular burn very similar to the one you get when lactic acid builds up in your muscles during an intensive workout
That day I logged onto my phone and for some reason my YouTube app was open and the first video on my home screen was meditation music. I put my earphones in and scrolled through the list as the muscles in my arms strained painfully from this action alone. I chose one of highly viewed relaxation music videos, adjusted my cervical pillow and positioned myself as comfortably as I could. I gazed up at my phone screen as the meditation music played and within a few minutes my eyelids and body felt heavy. I felt as if my whole body was slowly sinking into my mattress.
When I eventually opened my eyes, it felt like I had been lying there for a few minutes but in fact I had been there for nearly an hour. What struck me immediately was that I was in considerably less pain without needing copious amounts of pain medication which, was a real bonus. However, my symptoms seemed to get worse as the day went on, my head felt like a giant bowling ball and my neck muscles were constantly struggling as if they could not cope with the weight of my head. Hence, my evening relaxation sessions listening to relaxing music became a regular thing. Stress also has a physical effect on muscles especially those in your neck. As you tense up, the tightness in your neck muscles can contribute to neck pain especially if you have myelopathy. So, helping your neck muscles to relax also helps with pain relief.
I started looking deeper into the benefits of meditation and mindfulness because of the positive results I was experiencing. I moved on from relaxation music and started listening to guided meditation sessions instead. There are plenty of free ones on YouTube however, they vary in length of time and I would highly recommend you start with a short-guided meditation of around 5-10mins a day. You can then gradually increase this to suit your lifestyle when you get more used to the techniques. Just as rest and recovery are vital for your body the same goes for your mind and meditation is exactly that, an opportunity to put the hustle and bustle of daily thoughts and stresses to one side and give your mind a well-deserved rest.
The meditation that I find most beneficial is often referred to as mindfulness but to me that infers a mind full of thoughts whereas meditation is the total opposite. It is also described as a practice to quieten the mind, but it is almost impossible to quieten the mind totally without years of training so this wouldn’t be my choice of description for the meditation that I do. During a session thoughts will drift in and out of your mind, the intention during meditation is not to get involved with the thoughts or to judge them, just to make a mental note of them, and let them pass. I quickly realised that meditation didn’t just help me with pain it also helped me mentally to learn to live with myelopathy and its many challenges.
There are many other ways to meditate but this technique is what I use and find most beneficial for myself. Also, I feel I should just mention that you don’t need to meditate in the lotus position. I do it sitting up with a neck support and also lying down. The important thing is that you have to make your body comfortable before you can begin. My other advice would be not to force a meditation session or expect instant benefits, like everything practice makes perfect and make it enjoyable, not a chore. Eventually treat it as a daily routine, a time out for your mind from the busy world outside because your mental health is just as important as your physical health.
Basic Meditation Technique
Find a comfortable position. You can either be seated on a chair or on a bed. Keep your back upright if you can (but don’t force it). Notice your body and relax. Take a deep breath and focus on the experience.
Feel the natural rhythm of your breath. Notice the air temperature in and out. Let your breath flow naturally. You don’t need to do anything. Your body knows how to breathe on its own — don’t force it. Notice how your chest expands and contracts. Focus on your body — one breath at a time.
You might get distracted at some point. That’s okay. Don’t judge yourself. You can say “thinking” and let your thoughts flow naturally. Reconnect with your breath. When the five minutes are up, focus on your breath one more time.
A technique that I find very useful for when I get distracted is that I visualise that distraction as a bubble and as it enters my mind while meditating, I then imagine myself popping that bubble before it can manifest into a thought.
Practicing this exercise daily will improve your breathing but also bring calmness and more awareness to your life.
Scientific studies have shown that there is a long list of benefits of daily meditation, it costs nothing to do and you can do it from the comfort of your chair or bed, I’ve even done it on a train journey! There are some great apps you can use, one of my favourites is Inside Timer where you can log your activity. There are some great free guided meditations on there that I would highly recommend. To further convince you to give it a try we even have a myelopathy group on there that you can join. So why not give it a go, you really have nothing to lose and everything to gain.
The Challenge for Myelopathy Sufferers
The greatest challenge facing those with degenerative cervical myelopathy is understanding and expressing their symptoms and to have a medical practitioner recognize and diagnose the condition early. In my experience neck pain is most often the earliest symptom patients can distinguish and express effectively to others but can often be disregarded by patients until other symptoms present.
Other symptoms such as motor difficulties are harder to recognise, describe and understand until symptoms have progressed, leading to difficulty walking or falls. Myelopathy.org has been a great resource for my patients to understand their diagnosis and the reason for their symptoms. Educational efforts for the general public and medical practitioners will hopefully allow for earlier diagnosis and better outcomes.
Every day in my clinic, people with degenerative cervical myelopathy considering surgery ask me how long it will take to recover and if they will ever get back to ‘normal’. I explain the positive AO Spine data for early surgery for degenerative cervical myelopathy, however the patient stories of journeys to post-operative recovery on myelopathy.org are more relatable for my patients.
I look forward to myelopathy.org growing and providing a voice and resource to people at all stages of their journey with degenerative cervical myelopathy.
About Dr Rory Murphy
Dr Murphy is a neurosurgeon and assistant professor at the Barrow Neurological Institute at Barrow Brain and Spine specializing in complex spine surgery, cervical myelopathy, tumours and spinal cord injuries.
Barrow Neurological Institute is the world’s largest dedicated neurosurgical centre and a leader in neurosurgical training, research, and patient care. Dr Murphy has received numerous prizes from American Academy of Neurosurgery/ Congress of Neurosurgery and published in Nature, Neurosurgery, Spine and The Journal of Neurosurgery. Dr Murphy and his team are participating in a number of international trials aiding patients with cervical myelopathy and acute cervical spinal cord injuries.
Dr Murphy is a site PI for the Department of Defence funded Systemic Hypothermia in Acute Cervical Spinal Cord Injury Trial and was a primary investigator on a Missouri State Spine Injury Research Program project and has been funded by the McDonnell Neuroscience Centre.
Myelopathy.org Chief Scientist Wins International Award
Dr Fehlings wins the 2019 Ryman Prize
We are very proud to announce that Dr Michael Fehlings, head of the Scientific Advisory board for Myelopathy.org, was this morning awarded the Ryman Prize in recognition of his long career dedicated to helping older people suffering from debilitating spinal conditions.
The international jury chose Dr Fehlings from a strong field of contenders for his pioneering work on Degenerative Cervical Myelopathy (DCM), which is the most common form of spinal cord injury. As well as working on the treatment and management of DCM, Dr Fehlings has worked tirelessly to raise awareness of the condition within the medical profession.
The director of the Ryman Prize, David King, said “Dr Fehlings is a surgeon, a researcher and a teacher who has had a major impact on how patients are managed, and his work over many decades has directly contributed to improving the quality of life for many older people. We have no doubt his research and his teaching will have a positive impact on many lives in the years to come’’.
Dr Fehlings was presented with the prize by the Right Honourable Jacinda Ardern, Prime Minister of New Zealand, at a special ceremony in Auckland today.
About the Ryman Prize:
The Ryman Prize is administered by the Ryman Foundation. The annual international prize consists of a $250,000 grant which is awarded to the best invention, idea, research concept or initiative that has enhanced quality of life for older people. The prize was launched in 2015 to create the equivalent of a Nobel Prize for people working in the field of the health of older people.
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
-
- Photo courtesy of Toby Roney
-
- Photo courtesy of Toby Roney
-
- 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.
Website by Books et Al Marketing. Copyright 2019. Cookie & Privacy Policy . Website Accessibility Statement. Terms and Conditions.