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Q&A about chronic fatigue or Myalgic Encephalomyelitis (ME/CFS) with Dr Charles Shepherd

DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous

We are halfway through the chronic pain and fatigue theme, and we are very excited to announce that on Tuesday 6th August we will be hosting a Question and Answer session. This session will be led by Dr Charles Shepherd.

If you have any questions about chronic fatigue and Myalgic Encephalomyelitis (ME/CFS) then be sure to leave them below!

My name is Dr Charles Shepherd and I’m Medical Adviser to the ME Association (MEA).


The MEA is a medical charity that provides information and support to people who are experiencing chronic fatigue and are querying whether they may have M.E. (myalgic encephalopathy/encephalomyelitis), as well as to those where a diagnosis of M.E. has already been confirmed.

Chronic fatigue is a relatively common symptom of many disabilities and long-term illnesses, such as cancer and multiple sclerosis, as well as A WIDE RANGE OF INFLAMMATORY, INFECTIVE and neurological conditions. 

M.E., however, is a stand-alone diagnosis with other debilitating symptoms that are necessary for a diagnosis. More information on the symptoms and diagnosis of M.E. can be found on our website: https://www.meassociation.org.uk/about-what-is-mecfs/

Contact information

Why do I research M.E?

My longstanding clinical and research interest in M.E. follows personal experience. This was triggered by a nasty episode of chickenpox, which was caught from one of my patients. So, I have a very thorough understanding of all the problems that M.E. patients face in relation to diagnosis and management, and the many uncertainties that surround the disease.

I have a specific clinical interest in the assessment of people who present with chronic fatigue in primary care, especially in relation to making sure that people who have M.E. receive an early and accurate diagnosis.

I am happy to answer questions on all aspects of living with M.E. (i.e. management, education, employment, benefits, research) and how people with chronic fatigue should be assessed in order to arrive at the correct diagnosis for this very common symptom and how to then provide appropriate forms of management.

Leave your question in the comments below, and Dr Charles Shepherd will be live on the community on Tuesday 6th August at 10.30am to respond. See you then!

Replies

  • LifeOfPippaLifeOfPippa Member Posts: 13 Courageous
    Looking forward to this! 
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    My question is, how can I best support a co-worker with ME? 
    Scope
    Senior online community officer
  • Louise2001Louise2001 Member - under moderation Posts: 24 Connected
    How do I recognize the signs of ME? What research has been done?
  • jack13jack13 Member Posts: 21 Listener
    Ive had ME for 15 years. I find now my condition as worsened in the last year. Is ME a condition that will worsen the longer you have this illness? And is this common to happen. Longer your ill the worsening of the illness?
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,014 Scope community team
    Questions from Twitter:

    1) How are chronic fatigue, ME and fibromyalgia different to each other? And similar?
    2) When a rheumatologist diagnoses you with fibromyalgia, does this mean you also have ME and/or CFS? Or are they individual diagnoses?
    Community Partner
    Scope
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,014 Scope community team
    How should someone manage their chronic fatigue? There seems to be a fine balance between doing too much and not doing enough which can then make it harder when you do anything at all.
    Community Partner
    Scope
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    How can I support my friend who has the condition? She was recently diagnosed. 
  • jajajaja Member Posts: 76 Pioneering
    What level of pain should be expected in ME/CFS

    Thank you
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,014 Scope community team
    From Facebook: My daughter has CFS, when do I let her rest and when to try and keep her going?
    Community Partner
    Scope
  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    Looking forward to this! 
    Thanks Pippa

    I need to start dead on 10.30 this morning and may not be able to continue much beyond 11.30 as I then have to go to Heathrow to pick up my middle son, who is coming home from Kenya - where he lives and works.  And I'm just going to test one question as well to make sure I'm doing things correctly!
  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    Sam_Scope said:
    My question is, how can I best support a co-worker with ME? 
    Sam_Scope said:
    My question is, how can I best support a co-worker with ME? 
    SUPPORTING SOMEONE WITH ME /CFS AT WORK

    Good question because while many people with ME are no longer able to work, those who can will often need support from co-workers, modifications to their normal routine in relation to both physical and mental tasks, flexibility in relation to hours and duties, and hopefully an employer who is able to cope with someone who has a medical condition that can fluctuate on a day to day and week to week basis. That is quite a list!

    As far as how co-workers can help, it’s important to find out how the key symptoms of ME - ie activity induced physical fatigue; cognitive dysfunction - problems with memory, concentration etc;  pain;  balance and problems with being able to do things that involve prolonged standing  - are having in relation to the work they would normally do.  And then looking at what sort of support and practical assistance they may need in the workplace - and possibly in travelling to/from work as well.

    Also worth noting that ME/CFS is an illness that is covered by the old Disability Discrimination Act and the 2010 Equality Act

    We have an MEA information booklet that covers all aspects of employment in relation to ME:

    https://www.meassociation.org.uk/shop/medical-management-leaflets/employment-advice/

    And one on Caring for Someone with ME which covers some of this as well

  • Chloe_ScopeChloe_Scope Administrator Posts: 9,014 Scope community team
    Great to have you with us @DrCharlesShepherd!! We're really looking forward to having you on the community!  :)
    Community Partner
    Scope
  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    How do I recognize the signs of ME? What research has been done?

    DIAGNOSIS OF ME

    As we don’t yet have a diagnostic blood test for ME/CFS, the diagnosis has to be made on the way in which the illness starts, the characteristic symptoms, and making sure that other illnesses that can cause ME/CFS like symptoms are excluded (eg hepatitis C infection, coeliac disease, multiple sclerosis, thyroid disease)

    ME/CFS often starts in previously fit young adults in their 20s, 30s and 40s.   But children and adolescents are also affected - where it is one of the commonest causes of long term sickness absence from school

    Many people will predate the onset of their ME/CFS to an acute viral infection (and occasionally a vaccination) from which they 'fail to recover'

    The characteristic diagnostic symptoms at the onsert of ME are continuing flu-like symptoms (eg sore throats, enlarged glands) following the infection; activity induced muscle fatigue and weakness; cognitive dysfunction (= problems with working memory and concentration); pain in the muscles, nerves or joints; unrefreshing sleep; problems with balance and maintaining an upright posture (orthostatic intolerance), disturbed temperature control and alcohol intolerance 

    More detailed information on how the diagnosis is made can be found in a free download the MEA website:

    http://www.meassociation.org.uk/2016/05/the-importance-of-early-and-accurate-diagnosis-helpful-hints-for-healthcare-professionals-that-could-improve-prognosis-9-may-2016/

    The MEA website has a directory of all the ME/CFS clinics and services throughout the UK to where people can be referred by a GP if there is any query over a diagnosis

  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    What research has been done?

    RESEARCH INTO THE CAUSE OF ME/CFS

    We are now starting to piece together a complex medical jigsaw puzzle that involves infection, immune system dysfunction and abnormalities involving the brain and muscle

    In very simple terms it appears that a triggering infection produces an immune system response with the production of immune system chemicals called cytokines - which cause flu like symptoms and fatigue after any viral infection 

    However, it seems that this normal response to an infection doesn’t then calm down and causes the persisting flu like ME/CFS symptoms.  Research is also indicating that this persisting immune system activation is leading to low level inflammation (= neuroinflammation) in control centres in the brain that are responsible for things like pain recognition, sleep regulation and  temperature control

    Research into the muscle fatigue has also found that people with ME have a problem with the way in which they are able to produce energy at a cellular level - possibly because a key part of the energy producing apparatus in the muscle known as mitochondria are not functioning properly

    The MEA has a ring fenced research fund which supports biomedical research into ME.  We also fund a blood sample bBobank at the Royal Free Hospital in London, which is part of the big UCL Biobank.   A Biobank is where blood samples from well characterised volunteers with ME/CFS are stored and made available to research groups

    More information on research into ME and the ME/CFS Biobank can be found in the search section the MEA website:

    https://www.meassociation.org.uk/research/

  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    jack13 said:
    Ive had ME for 15 years. I find now my condition as worsened in the last year. Is ME a condition that will worsen the longer you have this illness? And is this common to happen. Longer your ill the worsening of the illness?

    PROGNOSIS/OUTLOOK FOR PEOPLE WITH ME/CFS

    There is a lot of anecdotal evidence on prognosis/outcome in ME.  But not a lot of good quality evidence from well conducted research studies that have followed people up for a long period of time.

    Based on what we know, a significant proportion of people will make some degree of improvement over time.  However, complete and sustained recovery occurs far less frequently

    As the condition becomes more chronic, most people reach a sort of ‘glass ceiling’ of improvement and remain fairly stable around this point - punctuated by periodic setbacks or relapses, often triggered by another infection

    Around 25% of people, in some stage of their illness, have a severe form of ME - equating to being wheelchair- bound. house-bound or bed-bound

    Progressive deterioration is unusual.  Where this occurs, it should prompt a new clinical assessment by a doctor, especially if this has occurred over a short period of time and without an obvious trigger (such as an infection, trauma or a very stressful event), or there are new symptoms that are not characteristic of ME/CFS (eg weight loss)

    We have an MEA information leaflet covering Relapses, Exacerbations and Flare Ups:

    https://www.meassociation.org.uk/shop/medical-management-leaflets/relapses-exacerbations-flare-ups/

    And one covering Prognosis and Permanecy - which is helpful in relation to applications, where necessary for early retirement on the grounds of permanent ill health
  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    Questions from Twitter:

    1) How are chronic fatigue, ME and fibromyalgia different to each other? And similar?
    2) When a rheumatologist diagnoses you with fibromyalgia, does this mean you also have ME and/or CFS? Or are they individual diagnoses?

    OVERLAP BETWEEN FIBROMYALGIA (FM) and ME/CFS

    My personal view is that there is a considerable degree of clinical overlap between ME/CFS and FM - but they are different conditions.

    So some specialists who see patients with ME/CFS-like symptoms (ie muscle pain, fatigue, cognitive dysfunction, unrefreshing sleep etc) will make a diagnosis of ME/CFS whereas others (rheumatologists in particular) may make a diagnosis of fibromyalgia in the same person.

    Some people have what I think is best described as a fibromyalgic component to their ME/CFS, whereas in other cases a diagnosis of pure FM would be more appropriate.

    One important difference is that you have to have pain (often symmetrical/the same on both sides of the body that is in several localised areas or 'tender points') to have FM whereas musculoskeletal pain (localized or widespread) is not always present in ME/CFS.

    The situation is clearly unsatisfactory and can be very confusing for patients.

    If someone wants to pursue a possible FM component I suggest they ask their GP for a referral to a specialist referral service for ME/CFS, or to a rheumatologist.

    And if you need more help with pain (regardless of diagnosis), and the GP cannot help, another option would be to ask to be referred to a hospital pain clinic

    We have an MEA information leaflet covering all aspects of fibromyalgia:


    We also have information leaflets covering the general management of pain in ME/CFS and leaflets covering specific drugs - amitripyline, duloxetine, gabapentin, pregabalin - that may be prescribed for pain relief in both FM and ME/CFS.

  • lisah15lisah15 Member Posts: 1 Listener
    What are differences between b12 deficiency and ME?   I have been vegetarian for 35 years. Was diagnosed ME 24 years ago following chicken pox when I was 18. Then b12 deficiency result of 84 three years ago. Could it have been b12 all along. I have neuro symptoms with memory, confusion, balance, numbness  speech problems which increase 4 weeks before my next b12 injection. GP says they are separate conditions but I read ME can be confused with B12 deficiency. I also have vit d deficiency.
  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    How do I recognize the signs of ME? What research has been done?

    DIAGNOSIS OF ME

    As we don’t yet have a diagnostic blood test for ME/CFS, the diagnosis has to be made on the way in which the illness starts, the characteristic symptoms, and making sure that other illnesses that can cause ME/CFS like symptoms are excluded (eg hepatitis C infection, coeliac disease, multiple sclerosis, thyroid disease)

    ME/CFS often starts in previously fit young adults in their 20s, 30s and 40s.   But children and adolescents are also affected - where it is one of the commonest causes of long term sickness absence from school

    Many people will predate the onset of their ME/CFS to an acute viral infection (and occasionally a vaccination) from which they 'fail to recover'

    The characteristic diagnostic symptoms at the onsert of ME are continuing flu-like symptoms (eg sore throats, enlarged glands) following the infection; activity induced muscle fatigue and weakness; cognitive dysfunction (= problems with working memory and concentration); pain in the muscles, nerves or joints; unrefreshing sleep; problems with balance and maintaining an upright posture (orthostatic intolerance), disturbed temperature control and alcohol intolerance 

    More detailed information on how the diagnosis is made can be found in a free download the MEA website:

    http://www.meassociation.org.uk/2016/05/the-importance-of-early-and-accurate-diagnosis-helpful-hints-for-healthcare-professionals-that-could-improve-prognosis-9-may-2016/

    The MEA website has a directory of all the ME/CFS clinics and services throughout the UK to where people can be referred by a GP if there is any query over a diagnosis

    I forgot to add that one of the key diagnostic symptoms of ME/CFS, which also helps to differentiate it from other causes of chronic fatigue, is post-exertional malaise/symptom exacerbation - where going beyond your physical or mental limitations leads to an excerbation of the overall condition.  This can be delayed till the following day
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,014 Scope community team
    Welcome to the community @lisah15! Thank you for your question :)
    Community Partner
    Scope
  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    How should someone manage their chronic fatigue? There seems to be a fine balance between doing too much and not doing enough which can then make it harder when you do anything at all.

    ACTIVITY MANAGEMENT

    Activity and energy management, which should include physical, mental and emotional activity, has to take acount of the stage (ie how long you have been ill), severity, progress and variability of your illness.

    In other words, the type of activity and energy management programme you carry out has to be done on a very individual and flexible basis.


    The type of activity and energy management programme we recommend at the MEA is a process called pacing - which is consistently reported by people with ME/CFS to be a very safe and helpful way of learning to cope with ME/CFS.

    We have MEA information leaflets covering activity and energy management, and pacing, in more detail


    The other point I would make is that getting the right balance between rest and activity is often a do-it-yourself process involving a degree of trial and error.  

    However, it is extremely helpful to have some good initial advice on establishing an appropriate baseline of safe activity levels, along with how to gradually and flexibility increase what you are able to do - as well as cutting back when appropriate

    To do so people really need some help from a health professional - doctor, OT, physiotherapist - who fully understands the way to deal with this key aspect of ME/CFS management.


    You could be referred by your GP to a hospital-based ME/CFS service for more help on activity management.  However, we do not recommend services that promote a more proactive form of activity management called graded exercise therapy (GET).

    There are also a few private services available who can provide good expert advice on activity management

    Eg - The Yorkshire Fatigue Clinic, which also takes NHS referrals:  http://www.yorkshirefatigueclinic.co.uk


    And if you want something to show to a physiotherapist, or other health professional who is surpervising activity management but appears to be giving unhelpful or even harmful advice, this is an article from a professional journal for physiotherapists:

    http://www.meassociation.org.uk/2011/01/physiotherapy-journal-urged-gentle-approach-to-prescribed-exercise-for-people-with-me-19-january-2011/

  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    How can I support my friend who has the condition? She was recently diagnosed. 
    SUPPORT FOR PEOPLE WITH ME/CFS

    As with any long term illness. this can involve supporting them physically, mentally and emotionally

    So the first step is to get some basic information on ME/CFS and how it is likely to affect a person

    Then talk to your friend/relative/partner about how it is affecting them physically, mentally and emotionally and what sort of help and support they would appreciate

    If you are finding this difficult we have a telphone information and support line where you can talk in confidence to one of our professionally trained volunteers - most of whom have personal experience of ME/CFS, or know or care for someone who does

    ME Connect telephone line is open every day of the week (10 to 12 noon; 2pm to 4pm and 7pm to 9pm) on 0344 576 5326

    Calls cost the same as landline numbers starting on 01 or 02
  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    jaja said:
    What level of pain should be expected in ME/CFS

    Thank you

    PAIN AND PAIN MANAGEMENT IN ME/CFS

    Most people with ME/CFS have pain but a significant minority have little or no pain. This can vary in both nature and intensity

    Pain can occur in ME/CFS in the muscles (= myalgia), joints (=arthralgia) and nerves. 

    The latter type of pain is called neuropathic pain.  It often has a shooting, burning or stabbing quality and may keep a person awake at night.  Neuropathic pain can also be associated with sensory disturbances - such as tingling or numbness, especially in the arms and/or legs.


    We have an MEA information leaflet that covers all aspects of pain management - including non drug approaches such as acupuncture and TENS machines:

    http://www.meassociation.org.uk/shop/management-leaflets/coping-with-pain/


    We also have MEA information leaflets covering the different prescription only drugs that people can find helpful for neuropathic pain relief in ME/CFS

    Amitriptyline:

    http://www.meassociation.org.uk/shop/management-leaflets/amitriptyline/

    Duloxetine/Cymbalta:

    http://www.meassociation.org.uk/2015/08/phase-3-trial-of-duloxetinecymbalta-for-fibromyalgic-pain-may-show-benefit-for-some-patients-with-mecfs-27-august-2015/

    Gabapentin/Neurontin:

    http://www.meassociation.org.uk/shop/management-leaflets/gabapentin-pain/

    Pregabalin/Lyrica:

    http://www.meassociation.org.uk/shop/management-leaflets/lyricapregabalin-for-pain-relief/


    The section on Pain Management in the MEA Management Report (pages 14 to 16) contains a great deal of patient evidence on what people with ME/CFS find helpful and not helpful when it comes to pain relief

    This report can be downloaded free from the MEA website:

    http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf


    How to get NHS help for pain:

    http://www.nhs.uk/Livewell/Pain/Pages/Longtermpain.aspx


    Similar information can be found in the Treatment section of the MEA purple book, which we can send to health professionals.  This is a fully referenced 152 page guide for health professionals that  covers Research, Clinical Assessment and Diagnosis and all aspects of Management.  It is updated each year.  We have money in our education budget to send copies free to health professionals - if contact details are supplied to the MEA office

  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    From Facebook: My daughter has CFS, when do I let her rest and when to try and keep her going?
    Hi Chloe

    Can I first refer you to the basic advice on activity management that I have already posted

    The bottom line here is achieving the right balance between periods of rest and relaxation and periods that involve the use of physical, mental or emotional energy.  And we recommend that this is best achieved through pacing - whereby people make small but gradual increases in the activity side of the equation when they are capable of doing so.  But always stepping back  to the rest/relaxation side when they are not able to do so

    There is clearly a lot of trial and error here and this is largely self-management

    It''s difficult for adults and even more difficult for children and adolescents - especially right at the start of this illness when good activity management appears to have a significant effect on how the illness will progress

    So help and monitoring from a healthcare professional (doctor, OT, physiotherapist etc) who does understand activity management can be incredibly useful here - if you can find the right person

    The MEA provides more detailed info on both activity management and pacing 

    And we also work very closely with charity called the Tymes Trust - who specialise in providing information and support for children and adolescents with ME/CFS
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,014 Scope community team
    Thank you for that @DrCharlesShepherd
    Community Partner
    Scope
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,014 Scope community team
    lisah15 said:
    What are differences between b12 deficiency and ME?   I have been vegetarian for 35 years. Was diagnosed ME 24 years ago following chicken pox when I was 18. Then b12 deficiency result of 84 three years ago. Could it have been b12 all along. I have neuro symptoms with memory, confusion, balance, numbness  speech problems which increase 4 weeks before my next b12 injection. GP says they are separate conditions but I read ME can be confused with B12 deficiency. I also have vit d deficiency.
    I think there is just this question left which was posted during the session :)
    Community Partner
    Scope
  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    lisah15 said:
    What are differences between b12 deficiency and ME?   I have been vegetarian for 35 years. Was diagnosed ME 24 years ago following chicken pox when I was 18. Then b12 deficiency result of 84 three years ago. Could it have been b12 all along. I have neuro symptoms with memory, confusion, balance, numbness  speech problems which increase 4 weeks before my next b12 injection. GP says they are separate conditions but I read ME can be confused with B12 deficiency. I also have vit d deficiency.
    VITAMIN B12 AND ME/CFS: GENERAL INFORMATION

    We have a new MEA information leaflet that covers all aspects of vitamin B12 and ME/CFS - causes of B12 deficiency, symptoms, blood tests, treatment, research into the possible link to ME/CFS: 

    http://www.meassociation.org.uk/.../could-vitamin-b12-be.../

    Summary of the key points about vitamin B12 and ME/CFS:

    Although some people with ME/CFS report that vitamin B12 injections have been helpful, there is no robust scientific evidence to currently demonstrate that vitamin B12 deficiency occurs in ME/CFS

    And there are no results from clinical trials to indicate that vitamin B12 injections are a safe and effective form of treatment for ME/CFS. 

    If people are going to take vitamin B12 it is very important to make sure that pernicious anaemia (PA) has first been excluded. PA is an autoimmune condition that results in decreased absorption of B12 from the gut - hence the need for injections. 

    Excluding PA is important because PA can cause very serious neurological complications (ie sub acute combined degeneration of the spinal cord:https://medlineplus.gov/ency/article/000723.htm) if not properly treated. 

    The MEA Ramsay Research Fund is keen to investigate the possible role of vitamin B12 in ME/CFS 

    So we have had some preliminary discussions regarding a small clinical trial involving B12 therapy in ME/CFS. 

    It is also worth noting that vitamin supplements are not recommended in the NICE guideline on ME/CFS. So most doctors are going to be reluctant to prescribe vitamin B12 injections to people with ME/CFS - unless there are sound reasons for doing so

    What NICE regard as inappropriate prescribing of vitamin B12 has also led to a GMC investigation:

    http://www.sunderlandecho.com/.../doctor-banned-from...
  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    lisah15 said:
    What are differences between b12 deficiency and ME?   I have been vegetarian for 35 years. Was diagnosed ME 24 years ago following chicken pox when I was 18. Then b12 deficiency result of 84 three years ago. Could it have been b12 all along. I have neuro symptoms with memory, confusion, balance, numbness  speech problems which increase 4 weeks before my next b12 injection. GP says they are separate conditions but I read ME can be confused with B12 deficiency. I also have vit d deficiency.
    Regarding your own situation:

    As you will be aware, adhering to a vegan or vegetarian diet can cause a deficiency of vitamin B12 - due to lack of intake of the vitamin

    But there are other reasons for this as well (eg pernicious anaemia - where the vitamin is not being absorbed)

    Vitamin B12 can cause a number of symptoms (fatigue, sensory symptoms) that occur in ME/CFS as well

    So it may not always be easy deciding which came first in the case of someone who has a confirmed vitamin B12 deficiency and symptoms that are more characteristic of ME/CFS

    From what you say, I think your GP is right to conclude that these to conditions should be regarded as two separate illnesses 


  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    lisah15 said:
    What are differences between b12 deficiency and ME?   I have been vegetarian for 35 years. Was diagnosed ME 24 years ago following chicken pox when I was 18. Then b12 deficiency result of 84 three years ago. Could it have been b12 all along. I have neuro symptoms with memory, confusion, balance, numbness  speech problems which increase 4 weeks before my next b12 injection. GP says they are separate conditions but I read ME can be confused with B12 deficiency. I also have vit d deficiency.
    I think there is just this question left which was posted during the session :)
    VITAMIN D AND ME/CFS:

    Vitamin D deficiency can occur in ME/CFS and people in the moderate or severe category are at increased risk - especially if they are housebound and do not get out in the sunshine and/or are on some form of restrictive diet

    So checking for vitamin D deficiency should, where appropriate, form part of the clinical assessment for ME/CFS

    Taking a vitamin D supplement - after taking advice from your doctor or pharmacist -  is also very sensible if you are at increased risk 

    Treating any vitamin D deficiency - which should be under medical supervision - is essential 

    All aspects of vitamin D, and vitamin D deficiency, are covered in the MEA information leaflet on vitamin D:

    http://www.meassociation.org.uk/shop/management-leaflets/vitamin-d/



    Summary of key points relating to the vitamin D (25-hydroxyvitamin D) blood test:

    Looking for reference ranges

    The National Osteoporosis society (NOS) guidelines (UK, 2013) and the Institute of Medicine (US) classify vitamin D results as follows:

    • 25-hydroxyvitamin D of less than 30 nmol/L is deficient
    • 25-hydroxyvitamin D of 30-50 nmol/L may be inadequate in some people
    • 25-hydroxyvitamin D of greater than 50 nmol/L is sufficient for almost the whole population.

    Low blood levels of 25-hydroxyvitamin D may mean that you are not getting enough exposure to sunlight or enough vitamin D in your food to meet your body's demand or that there is a problem with its absorption from the intestines. Occasionally, drugs used to treat seizures, particularly phenytoin (epanutin), can interfere with the liver's production of 25-hydroxyvitamin D.

    High levels of 25- hydroxyvitamin D usually reflect excess supplementation from vitamin pills or other nutritional supplements.




    Summary of research into vitamin D and ME/CFS from the MEA purple book for health professionals:
     
    Consider vitamin D deficiency in adults with restrictive diets and lack of access to sunlight. 

    A retrospective study of serum 25-OH (hydroxy) vitamin D levels in 221 ME/CFS patients found moderate to severe suboptimal levels, with a mean level of 44.4nmol/l (Berkovitz et al 2009). 

    Vitamin D deficiency often goes unrecognised and can cause bone or muscle pain and muscle weakness. It can co-exist with ME/CFS. 

    Levels < 25nmol/ml may be associated with symptoms.

    NB: Low serum calcium and phosphate and an elevated alkaline phosphatase are consistent with osteomalacia.





    Abstract of the paper from Berkovitz S et al (International Journal for Vitamin and Nutrition Research, 2009,79, 250 - 254)

    Serum 25-hydroxy vitamin D levels in chronic fatigue syndrome: a retrospective survey.


    INTRODUCTION:

    Patients with chronic fatigue syndrome (CFS) may be at risk of osteoporosis due to their relative lack of physical activity and excessive time spent indoors, leading to reduced vitamin D synthesis. We hypothesized that serum 25-OH vitamin D levels are lower in CFS patients than in the general British population.

    SUBJECTS AND METHODS:

    We performed a retrospective survey of serum 25-OH vitamin D levels in 221 CFS patients. We compared this to a group of patients attending the hospital for other chronic conditions and to a large British longitudinal survey of 45-year old women, using a variety of appropriate statistical approaches.

    RESULTS:

    25-OH vitamin D levels are moderately to severely suboptimal in CFS patients, with a mean of 44.4 nmol/L (optimal levels >75 nmol/L). These levels are lower and the difference is statistically significant (p<0.0004) than those of the general British population from a recent national survey, but similar to those in patients with other chronic conditions.

    CONCLUSIONS:

    This data supports the recommendation made in recent NICE guidelines that all patients with moderate to severe CFS should be encouraged to obtain adequate sun exposure and eat foods high in vitamin D. Oral or intramuscular vitamin D supplementation should be considered for those whose levels remain suboptimal.

  • Chloe_ScopeChloe_Scope Administrator Posts: 9,014 Scope community team

    Thank you so much @DrCharlesShepherdfor answering everyone’s questions today!

    I’m sure the answers will be really helpful, and the community really appreciate the time you have taken today when creating such through responses.

    I hope your trip to pick up your son from Heathrow goes well!

    Thank you to all of the members who have contributed the discussion, we hope you have gained some valuable insight. :)

    Community Partner
    Scope
  • LifeOfPippaLifeOfPippa Member Posts: 13 Courageous
    Really interesting questions and answers!

    Thank you for your time @DrCharlesShepherd, and thank you @Chloe_Scope and co for your support in hosting this!
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,014 Scope community team
    There really has been! Thank you @LifeOfPippa for introducing us to @DrCharlesShepherd. The time you both have taken to make this a success is really appreciated! :)
    Community Partner
    Scope
  • DrCharlesShepherdDrCharlesShepherd Member Posts: 16 Courageous
    And thanks for all the very good questions - which covered many of the key management topics for people with ME/CFS

    You clearly have a very impressive online resource here at SCOPE!

    CS
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Thanks for answering my question! 
  • HartleyHartley Member - under moderation Posts: 114 Courageous

    That photo is just over the river from St Thomas' hospital London..Pain management clinic..im there on the 29th Aug

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