Q&A about chronic fatigue or Myalgic Encephalomyelitis (ME/CFS) with Dr Charles Shepherd - Page 2 — Scope | Disability forum
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Q&A about chronic fatigue or Myalgic Encephalomyelitis (ME/CFS) with Dr Charles Shepherd

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  • DrCharlesShepherd
    DrCharlesShepherd Community member Posts: 16 Pioneering
    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
  • DrCharlesShepherd
    DrCharlesShepherd Community member Posts: 16 Pioneering
    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

  • DrCharlesShepherd
    DrCharlesShepherd Community member Posts: 16 Pioneering
    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_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Thank you for that @DrCharlesShepherd
    Scope

  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    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 :)
    Scope

  • DrCharlesShepherd
    DrCharlesShepherd Community member Posts: 16 Pioneering
    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...
  • DrCharlesShepherd
    DrCharlesShepherd Community member Posts: 16 Pioneering
    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 


  • DrCharlesShepherd
    DrCharlesShepherd Community member Posts: 16 Pioneering
    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_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger

    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. :)

    Scope

  • LifeOfPippa
    LifeOfPippa Community member Posts: 16 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_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    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! :)
    Scope

  • DrCharlesShepherd
    DrCharlesShepherd Community member Posts: 16 Pioneering
    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
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    Thanks for answering my question! 
  • Hartley
    Hartley 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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