New MEA Guide: ME/CFS The Ten Key Aspects of Management | 05 February 2020


Russell Fleming, Content Manager, ME Association.

This revised and updated guide brings together the 10 most important aspects of managing ME/CFS and gives links to further sources of information or advice from the ME Association.

It deals with diagnosis, finding a doctor who can help and drug treatment, energy management, emotional issues and sorting out work, education and family responsibilities. Also included is information on state and private sector benefits, social support, practical assistance and caring for people with ME/CFS.

The Ten Key Aspects of Management is a FREE and comprehensive guide written by Dr Charles Shepherd.
It and can be downloaded here or from the website shop.

Feedback

We feature the new guide in the current issue of ME Essential magazine, and we’d like very much to hear from you about the things you feel are most important when it comes to management.

Do you have any tips to share? Anything you have learned along the way? We want this FREE resource to be a working document that can be updated regularly with new information and advice from our community.

Please join the discussion on our Facebook page, let us know what you think other sufferers should know about managing M.E. and we’ll update the leaflet periodically. Or, if you prefer, you can send us your thoughts via email.

The Ten key Aspects of Management

Disclaimer
Drug and medical information contained in this guide is not intended to be a substitute for medical advice or treatment from your doctor. The ME Association recommends that you always consult your doctor or health professional about any specific problem. We also recommend that any medical information provided by the MEA is, where appropriate, shown to and discussed with your doctor or other health professional.

Extracts:

1. Make sure the diagnosis is correct and don’t automatically attribute new or worsening symptoms to ME/CFS

It is not always easy for a doctor to decide at what point in an illness it is appropriate to start using the term ME (myalgic encephalomyelitis/encephalopathy) or, as some doctors unfortunately prefer, CFS (chronic fatigue syndrome). As both names are commonly used, we have decided to use the compromise term ME/CFS in our information literature.

Where ME/CFS-like symptoms follow an acute infection, it’s quite likely that a diagnosis of a post-viral/infectious fatigue syndrome (PVFS), or post-viral debility, will be used during the first few weeks.

If the characteristic symptoms persist, a diagnosis of ME/CFS might then be made or should certainly be given serious consideration.

The 2002 Chief Medical Officer’s Working Group Report, the 2007 NICE guideline on ME/CFS, and the MEA guidelines all state that doctors should be aiming to confirm a diagnosis in straightforward cases after three months of symptoms in children and adolescents and four months in adults.

One of the reasons why some doctors find it difficult to make a diagnosis of ME/CFS is that this must be based on medical history alone – as there is no diagnostic blood test for this illness.

However, a number of specific blood and urine tests should always be checked before a doctor confirms a diagnosis of ME/CFS. This is because there are a considerable number of other illnesses – endocrine/hormonal, infectious, immunological, neurological, rheumatological – that can produce symptoms which are very similar to ME/CFS.

It is also important to check with your doctor when a new symptom appears, especially what are known as ‘red flag’ symptoms by doctors (e.g. weight loss, joint swelling, persisting fever or raised temperature), or an existing symptom (such as joint pain) becomes significantly worse, or changes in character. Do not automatically assume that this is just another aspect of your ME/CFS. The same advice applies when you have a significant relapse or exacerbation of ME/CFS symptoms and there is no obvious explanation – such as an infection or a significantly stressful event such as a surgical operation or physical trauma. Vaccinations can also occasionally trigger ME/CFS and/or cause an exacerbation of ME/CFS symptoms.

Routine blood tests that should be arranged to exclude other possible causes of an ME/CFS like illness:
– ESR and C-reactive protein (markers for inflammation and infection)
– Haemoglobin, red blood cell indices and serum ferritin (for anaemia and iron status)
– White cell count and differential (markers of infection)
– Biochemical panel including calcium, urea and electrolytes (sodium and potassium), total protein, blood sugar and Hb1c (for diabetes)
– Liver function tests
– Serum creatinine (kidney function test)
– Thyroid function tests
– Creatine kinase (muscle function test)
– Immunological screening test for coeliac disease

A full description of all the blood tests that should be checked before a diagnosis of ME/CFS is confirmed, along with other tests that may need to be arranged to exclude other conditions, can be found in the MEA information leaflet Blood Tests Explained and in section 6.6 of our book for health professionals: ME/CFS/PVFS: An Exploration of the Key Clinical Issues.

This publication also has a ‘differential diagnosis’ section that covers conditions that need to be considered before a diagnosis is confirmed. A similar but less comprehensive list of investigations is contained in the NICE guidelines on ME/CFS. The 2007 NICE guideline is now being rewritten and publication is expected in December 2020.

2. What can health professionals do to help?

Most people with ME/CFS can, and should, be managed by their general practitioner and members of a primary care health team. However, a significant proportion of GPs still lack the confidence and expertise to deal with this condition. Sadly, a small number still hold unhelpful or hostile attitudes towards people with ME/CFS.

Decisions about any aspect of management should be properly discussed with the health professional involved and mutually agreed – following the principles of informed consent that are produced by the General Medical Council and those set out in the NICE guideline.

If there is a query over diagnosis, or help is required in relation to any aspect of management, or you have a GP who just isn’t interested in ME/CFS, you can ask for a referral to a hospital-based specialist or ME/CFS service.

If you are severely affected – i.e. wheelchair-bound, house-bound or bedbound – you should be assessed by a doctor with expertise in ME/CFS at least once and preferably be under the joint care of a hospital-based team who can carry out domiciliary (home visiting) care and your GP.

For children and adolescents who are sufficiently unwell to be continually away from school, ongoing care should also involve a paediatrician.

Putting this advice into practice isn’t always easy because there are still parts of the UK – especially in Scotland, Wales and Northern Ireland – where it is very difficult to find a hospital-based specialist, or a multidisciplinary team, with the necessary expertise.

If there isn’t a local ME/CFS service, or the local service is not suitable, the Countess of Mar has established through a parliamentary question that doctors can make a referral to any other suitable service or consultant. MEA website link: https://tinyurl.com/zj3h8k8

  • Information about where to find hospital-based referral services can be found in the NHS Services Directory on the MEA website (see ‘Quick Links’ section). Feedback on NHS services being provided varies considerably – so it is worth asking a local ME group, or making use of MEA Facebook.
  • The MEA has information leaflets covering How To Deal With Your Doctor and Referrals to Specialist Services.

This month’s MEA website survey is all about doctor-patient relations and Dr Charles Shepherd will be helping to address any questions you might have on MEA Facebook this week. You can vote in the survey by visiting the website homepage. The poll can be found just below the ME Biobank promotion.

Help us to keep GPs up to date with ME/CFS

ME Awareness Week will take place from Monday 11th to Sunday 17th May and we need your help…

We desperately want to increase the awareness of ME/CFS and get more information out to the medical profession, in particular to frontline GPs.

There are still so many that do not understand this illness and ME Awareness Week gives us the opportunity to improve this.

Please send us your GPs name and address so that we can send them a copy of ME Essential magazine and the new MEA Clinical and Research guide (which will be available in April).

Contact information should be sent to: caroline.cavey@meassociation.org.uk by 15th March to ensure your GP receives the next magazine which will focus on ME Awareness Week.

Other subjects covered in The Ten Key Aspects of Management include:

3. Drugs can help to relieve symptoms, but we don’t yet have a cure

4. Striking the right balance between activity and rest

5. Dealing with emotional and mental health issues

6. Sorting out work, education and family responsibilities

7. Obtaining state and private sector benefits

8. How to obtain social support, practical assistance, disability aids and help for carers

9. Vitamins, minerals, supplements and nutrition

10. Alternative and complementary approaches

The Ten Key Aspects of Management is a FREE and comprehensive guide written by Dr Charles Shepherd.
It and can be downloaded here or from the website shop.

The ME Association

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