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: Primary Care
ME/CFS Specialist Services
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?
The 2021 NICE Guideline ME/CFS: Primary Care
I asked my GP if she was aware of the new NICE guideline on ME/CFS and whether she had read it. The answer was a very firm no and she explained that all doctors are suffering from information overload. So they can’t keep up-to-date with all the new NICE guidelines that appear.
Is there any way in which we could actually get our doctors to read this important new information?
Vaccines: Shingles
As I’m 70 I’ve been offered the shingles vaccine. I have had ME since 2016, consider myself to be severe, and already suffer from nerve pain. So I do not want to make things worse. But I’m also aware of people with ME who have had a significant exacerbation of symptoms following a vaccination. So should I have this vaccine?
Symptoms: Joint Pain and Irritable Bowel
I know that in addition to all the classic diagnostic symptoms of ME there are a considerable number of other symptoms that can sometimes occur. But should we always go and see our GP every time a new symptom appears? Or when an existing symptom changes character or gets significantly worse? In my case, after several years of having ME, I’ve now developed intermittent joint pains (without any swelling or redness) and bowel symptoms (mainly loose motions with occasional stomach cramps and bloating) that sound like irritable bowel syndrome. I haven’t yet mentioned these symptoms to my new GP – who tends to blame everything on ME! I don’t want to be seen as a hypochondriac, turning up at the doctors every time I don’t feel well. At the same time, I don’t want to find that a new and treatable medical condition is being missed
Symptom: Palpitations
Like many people with ME I have occasional palpitations. Does this mean that I might have some form of underlying heart disease? Or is this just another part of having ME? And are there any drug treatments that might be helpful?
The NICE Guideline ME/CFS: Northern Ireland, Scotland, and Wales
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
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?
Medical Records
I am currently in dispute with my GP – who is refusing to correct some inaccurate medical information that was written in my medical notes. The GP maintains that this reflects a difference of opinion over what was said at a previous consultation. However, I believe the information about what I am capable of doing, both physically and mentally, is inaccurate and could have an adverse effect when it comes to him providing information to the DWP on my benefit claim for personal independence payment. What can I do to get this corrected?
Menopause
I’m in my late forties and have had mild to moderate ME/CFS for several years. Over the past few months I’ve been feeling more tired than usual, my concentration has got worse, I often feel hot at night and I have vaginal dryness. Not surprisingly, my doctor has decided that I’m entering the menopause and has recommended HRT – which I’m reluctant to use as I don’t like taking drugs. I’ve also found that what used to be only occasional attacks of migraine have become a much more regular occurrence. Is this unusual? Or can the menopause have an adverse effect on both ME/CFS and migraine-type headaches?
Treatments: Prescribed Drugs and Informed Consent
In addition to ME/CFS I have developed both arthritis and osteoporosis and now require drug treatment for these two conditions. I was recently prescribed a new and fairly powerful drug that soon exacerbated a number of my ME/ CFS symptoms. However, I received no warning that this was something that could happen. As a result, the drug had to be stopped and changed to another one that I was able to tolerate. This upset might have been avoided if my doctor had also considered the potential side-effects a bit more carefully, and discussed them with me, before writing the prescription. Why doesn’t this happen?
Dr Charles Shepherd
Dr Shepherd has been Trustee and Hon. Medical Adviser to the ME Association for more than 40 years. He is integral to the charity's activities and provides information and support based on his professional knowledge, personal experience as a doctor with ME/CFS, and the understanding gained from helping many thousands of people with the condition. He was a member of the comittee responsible for the 2021 NICE Clinical Guideline and is a recognised expert on ME/CFS in the UK. His knowledge extends to Post-Viral Fatigue Syndromes (PVFS), Myalgic Encephalopathy/Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Post-Acute Sequelae of SARS-CoV-2 infection (PASC) or Long Covid.
If you have questions about ME/CFS or Long Covid, you can:
- Review the free information in the What is ME/CFS section of the website, and the free Covid-19 and Long Covid information in the website shop.
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Medical Matters is based on the popular ‘Ask the Doctor‘ series featured in the highly-regarded member’s magazine, ME Essential, and in the healthcare professional magazine, ME Medical. Both are produced by the ME Association and published as hard-copy magazines every 3 months and sent to members and healthcare professionals by post to home or business addresses.
If you are a Health Care Professional you can sign-up to receive ME Medical magazine (people with ME/CFS can also nominate their HCP by completing the sign-up form).