Useful Links

laptop computer

INFO PACKS FOR DOCTORS

BIOMEDICAL RESEARCH: IiMEC AND BRMEC

International annual meeting/collaboration on global biomedical ME research (run by UK charity Invest in ME Research).

CHECKLISTS AND TERMINOLOGY

  • Nice guidelines on ME CFS.
  • Scottish Good Practice on ME CFS.
  • ME stands for Myalgic Encephalomyelitis/Encephalitis/Encephalopathy.
  • CFS  (Chronic  Fatigue  Syndrome)  and PVFS (Post Viral Fatigue Syndrome).
  • ME was called CFIDS in USA in 1980s, 90s, now SEID; and CVS etc in other countries.
  • Controversy over the term CFS which many national UK ME charities want removing.
  • The term “Spoonie”.
  • The condition Fibromyalgia.
  • Lymes Disease.
  • Dr Berne symptom checklist.
  • Dr Myhill treatment checklist.
  • Dr Wilson Adrenal Fatigue checklist.
  • POTS Postural Tachycardia Syndrome.

NUTRITION

Go to nutrition page

BIOMEDICAL RESEARCHNEWSLETTER SUBSCRIPTIONS

  1. Invest in ME Research
  2. Previous Invest In ME Research.
  3. ME Research UK (£1).
  4. ME Association (Ramsay Research Fund).
  5. International Association for CFS / ME Research IACFSME.

BIOMEDICAL RESEARCH – GLOBAL COLLABORATIONS

  • European ME Alliance (biomedical research)
  • IiMEC (biomedical research)
  • BRMEC (biomedical research)
  • IACFSME International Association for CFS/ME (biomedical research)

OTHER ORGANISATIONS

ALTERNATIVE THERAPIES AND SERVICES (non are endorsed, ask others for feedback)

  • Trafford residents My Choice various services
  • Philip Weeks herbalist, naturopath etc.
  • North West College of Homeopathy (plus cheap homeopathy at Kath Locke and other places).
  • Cheaper Acupuncture Clinic (plus other places e.g. Angel Centre, Kath Locke etc).
  • Self Help Services and Groups.
  • Shiatsu College Manchester.
  • Fatigue Wise Dr Annice Mukherjee, Hormone Consultant & Fatigue Expert (also the local ME department at Salford Royal Hospital).
  • Dietary Needs Direct 01453 790 999 Dietary Needs Direct Sells a wide range of products for food intolerances,special diets and natural health care
  • Goodness Direct 0871 871 6611 organic and allergy free food, toiletries, books, household products, etc.
  • iHerbs Supplier of vitamins and supplements in the USA – cheaper than UK.
  • Dennis Gore Pharmacy, Prestwich
    (pharmacy, herbal, homeopathy -gives free advice, bulk discount.  Can order online) 26 Whittaker Lane, Prestwich, M25 1FX 0161 773 1994.
  • Healthy Spirit Didsbury (health products, classes and complimentary therapists). 37 Barlow Moor Rd, Manchester M20 6TW0161 434 6784 http://www.healthy-spirit.com/ 
  • Swinton Health Shop (health products and complimentary therapists) 0161 793 0091  177 Moorside Rd, Swinton, Salford M27 9LD.
  • Dr Raymond Perrin 0161 773 0123 The Perrin Clinic Oestopathic diagnosis of ME/CFS.
  • Gail Sumner-Physiotherapist Westhoughton Clinic: 01942 841088 Bolton Clinic: 01204 522 133 Mobile: 07976 915 314.

COPING CRISIS

  •  NHS emergency call 999 (or you can physically go into any A & E and ask for the CPN.
    NHS non-emergency call 111 (if they think it’s more urgent they will contact 999 services) https://www.england.nhs.uk/urgent-emergency-care/nhs-111/
  • Each hospital should have a ‘crisis team’ for follow-up care during your crisis.  You can access any local charities and groups, regardless of whether you access NHS services or not.
    • The Sanctuary, For Manchester aged 18+.  I heard it was a 24 hour line – website says:
      8pm-6am 0161 637 0808 for
      Manchester, Trafford, Salford, Stockport, Tameside, Glossop, Wigan and Leigh.
      4pm-12am midnight 0300 303 0581 Bolton.
    • Crisis Point (Stay in up to 10 days.  GP referral Manchester Council only). 0161 238 5149 
    • Samaritans National: 08457 90 90 90 (adults: 24 hours, 7 days a week). jo@samaritans.org.
      Local (Manchester):  0161 236 8000 8.30am-8.30pm  72-74 Oxford St, Manchester M1 5NH.
    • Childline/NSPCC 0800 1111 or email (under 19 year olds: 24 hours, 7 days a week).
    • Salford Mind info@mindinsalford.org.uk 0161 839 30 30
      (last I heard was you need to be a Salford resident under mental health services to access Salford Mind).
    • Manchester Mind 0161 769 5732 9am-5pm Zion Community Resource Centre/339 Stretford Rd, Manchester M15 4ZY.
    • Anxiety UK (national centre based in Hulme).
    • Assist Trauma.
    • Gaddum Centre.

 

WORK

  • Access to Work-NW England 0141 950 5327
    Access to Work Access to Work can help you if your health or disability affects the way you do your job. It gives you and your employer advice and support with extra costs which may arise because of your needs.
  • Job Centre Plus 0800 055 6688 Job Centre Plus Provides services that support people of working age from welfare into work.
  • CVS Salford Volunteering (or your local area)
  • Do It Volunteering
  • Many other independent organisations.