Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

ME/CFS Frequently asked questions and answers: MEA A-Z index updated to December 2016

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Dec 17, 2016.

  1. charles shepherd

    charles shepherd Senior Member

    ME/CFS Frequently asked questions and answers: MEA A-Z index for ME Essential magazine updated to December 2016

    Part 1 – A to H

    Acne treatment and ME, including Roaccutane (Autumn 2011)

    Activity management - gym based programme (Autumn 2009)

    Acyclovir and oral herpes (Summer 2012, page 14)

    Addison’s disease (Winter 2009)

    Adrenal gland function – short synacthen test (Autumn 2012)

    Aids and adaptions (Autumn 2012)

    Alcohol intolerance (October 2007)

    Alcohol intolerance - what is the cause? (Spring 2012, p15)

    Allergies (Autumn 2014)

    Allodynia (Summer 2015)

    Amantadine (Summer 2016)

    Amitriptyline (Summer 2010, p9)

    Amitriptyline for headaches (Spring 2011)

    Amitriptyline for pain and sleep (Spring 2016)

    Ampligen – and FDA decision to not approve use in USA (Summer 2013)

    Anaemia - iron deficiency (Autumn 2009)

    Animal testing (Winter 2009)

    Antibiotics - are they safe for people with ME/CFS? (April 2008)

    Antidepressants – withdrawal symptoms (Spring 2014)

    Antidepressants – safe in ME/CFS? (Summer 2015)

    Appetite – change in (Summer 2012, p14)

    Appetite – loss of (Summer 2016)

    APPG on ME – information to give to MPs (February 2013)

    Asthma and ME/CFS overlap (Winter 2016)

    Autism (Winter 2013)

    Balance problems (Spring 2016)

    Beetroot juice – can it boost energy levels? (Summer 2016)


    Atos interviews – permission to record (Summer 2012, p19)

    Benefit medical examinations at home (Spring 2005)

    Carer's credits (Autumn 2011)

    ESA appeals (Winter 2010 and Autumn 2011)

    ESA – is the situation getting any better? (Spring 2015)

    ESA – preparation for medical assessment (Autumn 2016)

    Fit notes – what is a fit note (Summer 2014)

    Industrial Injury Benefit (Winter 2010, p13)

    Maximus taking over the DWP contract from Atos (Summer 2015)

    PIP Tribunal advice (Autumn 2015) advice

    Sickness certificates from a GP (Spring 2011)

    Supportive medical evidence – what can the doctor do? (Autumn 2013)

    Test results – is it worth including them on an ESA application? (Summer 2014)

    Tribunal – attending one (Summer 2012, p14)

    Tribunal for PIP (Autumn 2015)

    Beta blockers (April 2007)

    Biobank - donations of blood samples (Spring 2011)

    Blepharospasm – eyelid twitching (Summer 2013)

    Blood donation and ME/CFS - can I give blood? (April 2008)

    Blood pressure – high/hypertension (Winter 2013)


    CRP and ESR (Winter 2015)

    Blue Badge problems (April 2008)

    Blue Badge refusals (Spring 2012, p15)

    Body piercing - hazards of (Winter 2010, p12)

    Book list (Autumn 2011)

    Burrswood Hospital – What happens there? (Winter 2014, p8)

    Burrswood Hospital – in patient care (Spring 2016)

    Caffeine – how much is safe? (Spring 2014)

    Car driving - can I still drive? (February 2009)

    Car driving – DVLA guidance (Autumn 2013)

    Carer's credits (Autumn 2011)

    Cavity wall insulation (Winter 2012)

    Changing a GP (Summer 2010, p8)

    Chocolate (January 08)

    Classification of ME/CFS (Winter 2012)

    Classification: Illness or Disease? (Summer 2012, p15)

    Clinical trials – how do they work (Summer 2013)

    Coeliac disease (April 2006)

    Coeliac disease - home testing kits (January 2008)

    Coeliac disease and wheat intolerance (Winter 2010, p13)

    Coeliac disease/gluten free diet (Summer 2015)

    Coenzyme Q10 – Does it work? (Winter 2014, p8)

    Coffee drinking – how much is safe? (Spring 2014/p128)

    Cognitive dysfunction – severe (Winter 2013)

    Cognitive dysfunction – deteriorating (Spring 2014/p128)

    Cold fingers and toes (Spring 2010)

    Cold sores – treatment (Winter 2016)

    Colds and a cough that won’t go away (Spring 2016)

    Contagious - is ME/CFS? Can it be passed to other family members (July 2008)

    Contraception choices in ME/CFS (Spring 2015)

    Coughs and colds in winter – that won’t go away (Spring 2016)

    Cortisol - investigating low levels (November 2008)

    Creatine kinase blood test (Winter 2010, p14)

    Creatine supplements (April 2006)

    Critical Illness Insurance (Autumn 2009)

    CRP blood test (Winter 2015)

    Curcumin for fatigue (Summer 2011)

    Dental anaesthetics (Spring 2010)

    Dental amalgam filling removal (Autumn 2015)

    Depression (February 2013)

    Diabetes (Winter 2013)

    Diabetes type 2 – is it more common in ME/CFS? (Summer 2016)

    Diagnosis - is it correct? (July 2008)


    Dietary management of irritable bowel syndrome - Sue Luscombe ( Winter 2015)


    MS or ME? (Autumn 2015)


    Disability Discrimination Act (April 2007)

    Aids and adaptions (Autumn 2012 and Summer 2013)

    Disabled Facilities Grant (Summer 2013)

    Disability leave – what is it? (Autumn 2013)

    Disability rating scale (Autumn 2013)

    Disabled students allowance (Winter 2009)

    Dorsal root ganglionitis (Autumn 2012)

    Driving a car with ME/CFS (Autumn 2013)

    Dry eyes (Autumn 2009)

    DLA care component: cooking test (January 2008)

    Drugs, including statins, that can cause muscle problems (November 2008)

    Dysphagia (Winter 2016)

    EPA/Eicosapantaenoic acid (Winter 2014, p9)


    Employment problems (Autumn 2005)

    Employment: gradual return to work (Winter 2009)

    Employment: ill health retirement criteria (Spring 2011)

    Employment: should I tell my employer that I have ME/CFS (Spring 2011)

    Employment: sickness certificates from a GP (Spring 2011)

    Endometriosis (July 2007)

    Ehlers-Danlos syndrome (Spring 2011)

    Epidemiology - how many people have ME/CFS (Winter 2012)

    Epileptic type seizures in ME/CFS (Spring 2012, p15)

    ESR blood test (Spring 2010 and Winter 2015)

    Examination findings – who don’t doctors examine patients any more? (Autumn 2015)

    Exercise testing – Vo2 max test ((Autumn 2014)

    Eyelid twitching - blepharospasm (Summer 2013)

    Fasciculations (Summer 2015)

    Fatigue levels increasing – explanations for (February 2013)

    Fertility (February 2009)

    Fit notes (Summer 2014)

    Functional neurological syndrome (Winter 2015)

    Gabapentin for pain (Autumn 2012)

    Gastric distress/motility problems (Winter 2009)


    GPs – Home Visits (Winter 2014, p9 and Autumn 2016)

    GPs - unhelpful: what to do (Jan 2008)

    GPs - changing to another one (Summer 2010, p8)

    Gilbert’s syndrome (February 2013)

    Ginseng (Spring 2016)

    Gluten free diet (Summer 2015)

    Good days and bad days (Summer 2009)

    Hair problems (Winter 2012)

    Headaches (Winter 2009, p15)

    Headaches – getting worse (Spring 2014)

    Headaches - use of amitriptyline (Spring 2011)

    Headaches – use of tinted glasses (February 2013)

    Haemochromatosis - misdiagnosis (July 2008)

    Heat sensitivity (July 2007)

    Herpes and acyclovir (Summer 2012, p14)

    HIV/AIDS - as part of the differential diagnosis (Spring 2011)

    Home visits by GPs (Winter 2014, p9 and Autumn 2016)

    Hospital services (February 2009)

    Housing – rehousing on medical grounds (Autumn 2014)

    HRT – what are the alternatives? (Summer 2015)

    Hyperacusis/sensitivity to loud noise (November 2008 and Autumn 2016)

    Hyperbaric oxygen therapy (Spring 2015)

    Hypermobility syndromes (Spring 2011; pwme contribution Spring 2012, pages 32 – 33; Winter 2013))

    Hypertension (Winter 2013)

    Hypoglycaemia (Autumn 2016)

    Hypnosis for sleep disturbance (Summer 2014)

    Hypnotherapy (Summer 2012, p15)

    Hypothalamic function (Spring 05 and Autumn 2011)

    Hypothyroidism (Spring 2014)
  2. charles shepherd

    charles shepherd Senior Member

    Part 2: I to Z

    Ill health retirement (Spring 2011)

    Immune system – overactivity (Summer 2012, p15)

    Immune dysfunction in ME/CFS – tests, treatment (Autumn 2013)

    Immunoglobulin treatment for chronic pain (Spring 2011)

    Inherited - can ME/CFS be passed on to other family members? (October 07, p13)

    Industrial Injury Benefit (Winter 2010, p13)


    Critical illness cover (Autumn 2009)

    Life insurance (Winter 2012 and Winter 2014,p9)

    PHI disputes (April 2008)

    XMRV problems (Summer 2010, p8)

    Iron supplements - can they improve fatigue levels? (Spring 2012, p15)

    Irritable bowel syndrome – dietary management – Sue Luscombe (Winter 2015)

    Irritable bowel syndrome of IBD? (Winter 2016)

    Isoprinosine/Imunovir (January 2006)

    Itching and fatigue (November 2008)

    Jaundice (February 2013)

    Joint hypermobility – see hypermobile joints

    Joint pains (Autumn 2009)

    Jury service (Summer 2015)

    Life expectancy (Summer 2016/137)

    Life insurance – why is it difficult to obtain? (Winter 2014, p9)

    Lightning Process (Summer 2010, p10) - and issue 105 (pages 40-41)

    Liver function tests (July 2006)

    Lumbar puncture (October 2007)

    Lustral/sertraline (Autumn 2012)

    Lyrica/pregabalin (Spring 2010)

    Magnesium (Spring 2010)

    Marshall protocol (Summer 2011)

    Maximus - DWP benefit assessments (Summer 2015)


    Paying for MEA literature (Winter 2010, p13)

    Medical Research Council - why are they so reluctant to fund biomedical research into ME/CFS? (July 2008)

    Medicines and drugs - cautions when buying on-line (Spring 2012, pages 16-17)

    Melatonin (Spring 2005)

    Memory and concentration problems (Summer 2009)


    Menopause, HRT etc (January 2008, p13)

    Menopause - vaginal dryness/pain (Spring 2010)

    Menstrual exacerbation of symptoms (Winter 2013)

    Menopause – alternatives to HRT (Summer 2015)

    Mercury (dental) filing emoval (Autumn 2015)

    Methyphenidate/Ritalin (July 2007)

    Mitochondria – what do they do? (Summer 2013)

    Mouth ulcers (Summer 2009 and Autumn 2012)

    MRI brain scan – adverse effects? (Winter 2016)

    MS (multiple sclerosis) r ME/CFS? (Autumn 2015)

    Muscle symptoms (Winter 2010 - p11)

    Muscle twitchings (Summer 2015)

    Muscle: creatine kinase blood test (Winter 2010, p14)

    Myoclonus (Autumn 2016)

    Naltrexone (Autumn 2009 and Winter 2012)

    Nausea (Summer 2013)

    Neurologist attitude to ME/CFS (Winter 2015)

    Neuropathic pain (Winter 2015)

    NHS clinics – self referral (Autumn 2014)

    NHS clinics – what happens when you visit one? (Winter 2016)

    NHS Continuing Care Plan (Summer 2014)

    NICE guidelines and doctors freedom to prescribe (Summer 2010, p11)

    Night sweats (Spring 2014)

    Nimodipine - is this drug a new treatment for ME/CFS? (April 2008)

    Nimodipine – why won’t my doctor prescribe this drug? (Summer 2013)

    Nomenclature: SEID (autumn 2015)

    Nomenclature: ME and CFS – why does MEA also use CFS? (Spring 2016)

    Ovarian cancer - part of the differential diagnosis (Summer 2011)

    Overseas medical treatment and problems with entitlement to NHS care (November 2008)

    Overweight – can it affect the underling disease process (Summer 2014)

    Oxygen therapy (Winter 2010, p12)

    Oxygen therapy – oxygen concentrators (Summer 2012, p15)

    Oxygen therapy – hyperbaric oxygen (Spring 2015)

    Ovarian cancer, fatigue and IBS (Spring 2014 and Summer 2015)

    PACE trial and inclusion of ME sub-group (Summer 2012, p16)


    Allodynia (Summer 2015)

    Neuropathic pain (Winter 2015)

    See: Gabapentin, Immunoglobulin, Pregabalin/Lyrica and TENS machine

    Safety of over-the counter preparations (Spring 2012, p17)

    Palpitations (Summer 2010, p11)

    Paraesthesiae (Autumn 2016)

    PHI/Permanent Health Insurance payment disputes (April 2008)

    Pleconaril (Autumn 05)


    Dorsal root ganglionitis (Autumn 2012)

    Post-mortem research - what to do if you want to leave your body to ME research (November 2008 and Spring 2010)

    Still being able to donate other body parts (Spring 2011)

    How much tissue is required (February 2013)

    Post-viral fatigue syndrome - what is it (Spring 2011)

    Pregabalin/Lyrica for pain relief (February 2010)

    Probiotics (Autumn 2016)

    Rehousing on medical grounds (Autumn 2014)

    Relapse after years of good health (Winter 2014, p10)


    Research - volunteering for (Summer 2009 and Winter 2015)

    Research funding to NHS clinic - UK vs USA (Spring 2012, p17)

    UK ME/CFS Research Collaborative (Summer 2013)

    Restless legs syndrome (Spring 2011)

    Roaccutane for acne (Autumn 2011)

    Ribose - is it an effective supplement? (July 2008)

    Rituximab – clinical trials (Summer 2013)

    Rituximab – obtaining on NHS (Winter 2013 and Summer 2014)

    Rituximab update (Autumn 2015)

    Rituximab – When will a UK trial start? (Winter 2016)

    Selenium (Summer 2016/137)

    Sertraline/Lustral (Autumn 2012)

    SEID – name change (Autumn 2015)


    Burrswood Hospital – What happens there? (Winter 2014, p8)

    Cuts to NHS services for ME/CFS (Autumn 2011)

    How to try and set an NHS clinic up post NICE (January 08)

    Long NHS Waiting lists (Winter 2010, p12)

    Refusal to refer (Spring 2012, p17)

    Self referral to NHS clinics (Autumn 2014)

    Shingles vaccine (Winter 2013)

    Sickness – nausea (Summer 2013)


    Hypnosis for sleep disturbance (Summer 2014/129)

    Research into sleep disturbance (February 2013)

    Restless legs syndrome (Spring 2011)

    Sleepiness during the day (April 2007)

    Sleep paralysis (Spring 2015)

    Sodium oxybate (Summer 2012, p16)

    Social care assessments (Spring 2011)

    Sodium oxybate for sleep (Summer 2012, p16)

    Sore throat remedies (Summer 2014)

    SPECT scans (Summer 2010, p9)

    Statins and muscle problems (November 2008, p10)

    Steroids (Summer 2009)

    Steroid treatment – is it safe? (Spring 2015)

    Sweating – night sweats (Spring 2014)

    Swallowing problems (Winter 2016)

    Synacthen test for adrenal function (Autumn 2012)

    TENS machine (Winter 2009, p112)

    Test for ME (February 2009, p12-13)

    Throat and voice symptoms (Winter 2010, p12)

    Sore throat remedies (Summer 2014/129)

    Thyroid function and ME (Spring 2009 and Spring 2014)

    Thyroid function tests (Winter 2013 and Winter 2014, p10)

    Thyroid function tests - regular monitoring (Summer 2011)

    Tinted glasses for headaches (February 2013)

    Tonsils removal (October 07)

    Travel sickness (Summer 06)

    Tremor in the hands (Autumn 2011)

    Vaccinations (Autumn 2012)

    Valganciclovir (October 2007 and Autumn 2011)

    Vegetarians and anaemia (Autumn 2009)

    Vitamin B12 injections (October 2006, p18 and Winter 2015)

    Vitamin B12 testing (Summer 2011)

    Vitamin C - high dose (Summer 2009)

    Vitamin D deficiency and sunlight (Spring 2014)

    VO2 max exercise test (Autumn 2014)

    Volunteering for research studies (Winter 2015)

    Weight gain and how to lose weight (October 2007)

    Weight gain and underlying disease process (Summer 2014)

    Weight gain and weight loss (Sue Luscombe – Autumn 2015)

    Weight loss (Spring 2015)

    Wheat intolerance (Winter 2010, p13)

    XMRV and MLVs

    XMRV - patient selection/criteria for research trials (February 2010)

    XMRV - and insurance (Summer 2010, p8)


    Hydrogen sulphide urine test (August 2009)

    Melatonin (as Circadin) becomes available on NHS prescription (July 2008)

    Valganciclovir - meeting with Roche Pharmaceuticals (November 2008)

  3. trishrhymes

    trishrhymes Senior Member

    Thank you. Is there any way of accessing these articles if we do not have copies of ME Essentials magazines?
  4. charles shepherd

    charles shepherd Senior Member

    Trish - Unfortunately, we don't at present have back copies of the MEA magazine on the MEA website or copies of all these FAQs available to download

    It's something we would like to do - the other possibility is collecting all the regularly asked questions to ME Connect and placing them into a booklet

    We also now have around 80 leaflets, booklets and books covering all aspects of research into and management of ME/CFS

    MEA literature list:


    This list includes Dr Melvin Ramsay's book on the history of ME/CFS, which has been republished by the MEA with kind permission of the Ramsay Family. All profits from the book go to the MEA Ramsay Research Fund

    And there will be an announcement next week of another important item of biomedical research that we have just agreed to fund from the MEA RRF

    Dr Melvin Ramsay's book:

    Joh likes this.
  5. trishrhymes

    trishrhymes Senior Member

    Thank you . I have bought and read Ramsay's book. It's an excellent account of the Royal Free outbreak and subsequent story up to the 1980's including refuting the BPS model. I recommend it for anyone who wants to understand the history of ME in the UK and elsewhere.

    I'm afraid I've thrown away all my back copies of ME Essentials.


    It would be great to have the questions and answers collated on the MEA website. Though maybe not the best use of people's time organising this if most of it is covered in the leaflets and the Purple book. (I must order myself another copy - I gave mine to my GP....)
    Last edited: Dec 17, 2016
  6. charles shepherd

    charles shepherd Senior Member

    Melvin Ramsay's book covers the early history of ME - in both the endemic and epidemic forms - and has detailed accounts of the early outbreaks in:

    Los Angeles in 1934

    Switzerland in 1937 and 1939

    Iceland in 1948 - 1949

    Adelaide, Australia in 1949 - 51

    New York State in 1950

    London (Middx Hospital) in 1952 - where I trained as a medical student

    Washington DC in 1953

    Punta Gorda, Florida in 1956

    Athens 1958

    Ayrshire in 1980 - 83

    The outbreak of ME in North West London and at the Royal Free Hospital in 1955 has, not surprisngly, been given its own chapter
    Mark, Mel9 and trishrhymes like this.
  7. charles shepherd

    charles shepherd Senior Member

    We still have medical education funding to send out free copies of the MEA purple book to health professionals in the UK

    We can do this for both members and non members of the MEA

    If anyone wants a copy sent to a GP or physio etc then please send their name and address to the MEA office along with any additional information that is relevant

    NB: Preparation, printing of this 132 (A4) page book, packaging and postage costs us around £8 - which is the price we have to normally charge

    MEA purple book:

    Mark and trishrhymes like this.

See more popular forum discussions.

Share This Page