MEDICAL MATTERS

  • Medical Matters features questions asked by Members of the ME Association on health-related topics.
  • Dr Charles Shepherd and the ME Association's other advisers answer these questions by sharing their expert knowledge.
  • Medical Matters is based on the popular ‘Ask the Doctor’ series in ME Essential magazine.
  • It is a free resource that supplements the detailed information contained in the full range of literature that can be found in the website shop.

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Questions in the Category: Referral

Meeting my MP – what should I ask?

ME Essential Summer 2024

As we are heading for a general election later this year, I thought it would be useful to see if I could arrange a face to face meeting with my MP. To my surprise I have been given 15 minutes at his local ‘surgery’ in a few weeks time. What are the most important issues that I need to make my MP aware of?

Appointments: Hospital

ME Essential Spring 2024

I asked my GP to refer me to the ME/CFS Clinic at our local hospital two months ago. She was asked to fill in a form that provided a lot of information about my symptoms and how they affect me. I also had to have a lot of blood tests – the results of which all came back as normal.

Since then I haven’t heard anything further about arranging an appointment. Neither has my GP.

What can I do?

Functional Capacity Assessments and Evaluations

ME Essential Autumn 2023

I have been receiving regular payments over several years from an insurance-based Income Protection Policy. This comes as part of my employment package.

I also receive PIP benefit from the DWP – who accept that I have significant problems with both mobility and care. So I would have thought that this would be adequate on-going evidence of my disability.

The insurance company now want to send me for a functional capacity test to assess whether I am capable of working again. What will this involve?

Is this test a valid way of assessing capability for work if you have ME/CFS? And can I refuse to do so if I am not happy with the way I am going to be assessed?

ME/CFS Specialist Service: Referral

ME Essential Winter 2022

After having a nasty viral infection (probably glandular fever) at the beginning of the year I have been struggling to get an explanation from my GP as to why I haven’t got back to normal health. He has now decided that I probably have post-glandular fever ME/CFS. However, my GP admits that he doesn’t know very much about how to manage ME/CFS. I have asked for a referral to a specialist ME/CFS service but it turns out that we don’t have one. I then asked if I could be referred outside the local area to a service that has good reports from people I have heard from. However, I’m finding it very difficult to get this moving because my GP says I can’t choose where I want to be sent. Please could you explain what my rights are?

ME/CFS Specialist Services

ME Essential Winter 2022

The new NICE guideline was published a year ago. But here in Northamptonshire we still don’t have a specialist ME/CFS service where GPs can refer people for help with either diagnosis or management. And there doesn’t appear to be any formal arrangement with a referral centre anywhere else that GPs can refer people to. I think this is unacceptable. So I am going to raise this with my MP – hopefully by arranging a meeting. Do you have a brief summary of the key points that I need to make?

Post-Viral Fatigue Syndrome, Myalgic Encephalomyelitis or Encephalopathy, Chronic Fatigue Syndrome, and Long Covid

ME Essential Winter 2022

Please can you define what PVFS, ME/CFS, and Long Covid mean. I am having difficulty determining if they are the same disease or different. Thank you!

The 2021 NICE Guideline ME/CFS: Regrets

ME Essential Autumn 2021

I know you feel that the new NICE guideline is a major improvement on the first one. So do I. But do you have any concerns, disappointments or disagreements on the content?

The NICE Guideline ME/CFS: Northern Ireland, Scotland, and Wales

ME Essential Autumn 2021

I know that the recommendations in the new NICE guideline apply to England. But what is the situation in Wales, Scotland and Northern Ireland where GPs often lack the necessary skills to diagnose and manage people with ME/CFS and hospital-based referral services are either poor or non-existent.

Allergies: Hay Fever

ME Essential Autumn 2020

Is hay fever more common in people with ME? I’m in my midthirties and never had hay fever before being diagnosed with ME several years ago. Every summer and autumn I now have the full list of hay fever symptoms – runny nose, blocked nose and red itching eyes. This year it has been worse than ever and my chest has been wheezy as well. MY GP thinks it may have triggered mild asthma. And is it safe to use a steroid nasal spray for hay fever if you have ME?

Symptom: Dizziness

ME Essential Spring 2020

I often feel light-headed and unsteady on my feet, and have done so since my ME started about five years ago after a nasty infection. But I’ve recently been having ‘dizzy spells’ where I feel faint, sickly and much more unbalanced. These attacks come on without warning and then settle down. Is this part of ME?

Charles Shepherd

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