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


Russell Fleming, Content Manager, ME Association.

The Ten Key Aspects of Management discusses the most important aspects of managing ME/CFS and gives links to further sources of information from the ME Association.

It deals with diagnosis, finding a doctor who can help, 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, Hon. Medical Adviser to the ME Association.

It has been updated and republished to take into account feedback received since the initial launch at the end of January.

You can downloaded it here or from the website shop.

Feedback

We feature the new guide in the Winter 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, we want to hear what you think other sufferers should know about managing ME/CFS 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 M.E. (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 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 NICE (National Institute for Health and Care Excellence) clinical guideline recommends that a child or young person who has symptoms suggestive of ME/CFS should be referred to a paediatrician for assessment within six weeks of presentation (1.2.2.2).

Actual diagnosis should be confirmed within three months of symptom presentation in the case of a child or young person, and four months in the case of adults (1.3.1.1).

The NICE clinical guideline – which frames recommendations to the NHS – is being rewritten by experts and stakeholders, with publication of a new guideline expected in December 2020.

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 the diagnosis.

This is because there are many other illnesses – endocrine/hormonal, infectious, immunological, neurological, rheumatological – that can produce symptoms very similar to ME/CFS.

It is also important to check with your doctor when a new symptom appears, especially what doctors call ‘red flag’ symptoms (for example 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 just another aspect of your ME/CFS.

The Key Symptoms of ME/CFS
·        Post-exertional malaise
·        Activity-induced muscle fatigue
·        Cognitive dysfunction
·        Sleep problems
·        Ongoing flu-like symptoms including sore throats and tender glands
·        Orthostatic intolerance
Other common symptoms include:
·        Pain – muscles, joints and nerves
·        Problems with balance and temperature control
·        Gastro-intestinal symptoms
·        Sensitivity to light and sound
·        Alcohol intolerance

Known triggers for significant exacerbations in symptoms or relapses include infections and these can also occur after overdoing things mentally or physically. Traumatic physical or emotional events can play a part here and the same advice applies – to go and see your GP – even when you have a significant relapse or exacerbation of symptoms and there is no obvious trigger.

Vaccinations have also been reported by some people with ME/CFS as a trigger factor for the condition and/or a cause of symptom exacerbation.

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 our leaflet entitled Blood Tests Explained.

We also discuss this topic at length in section 6.6 of our book for health professionals: ME/CFS/PVFS: An Exploration of the Key Clinical Issues. This authoritative clinical and research guide has a ‘differential diagnosis’ section covering conditions that need to be considered before a diagnosis is confirmed.

2. What can health professionals do to help?

NICE recommends that care for people with ME/CFS is led by primary healthcare professionals. In most cases, this means your GP or, in for children and young people, a paediatrician – with referral to an NHS specialist service where necessary.

However, many GPs lack the time, confidence and expertise to deal with this condition. And, sadly, some healthcare professionals still hold unhelpful or hostile attitudes.

Decisions about any aspect of care should be properly discussed with the health professional involved and mutually agreed – following the rules of informed consent produced by the General Medical Council and those set out in the NICE guideline (see: NICE General Principles of Care).

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 bed-bound – you should be assessed by a doctor with expertise in ME/CFS at least once. Preferably you should be under the care of a hospital-based team. Ideally, they should visit you at home.

For children and adolescents who are sufficiently unwell to be continually away from school, on-going 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.

Hospital-based specialist services and management

Information about where to find hospital-based referral services, details about NICE recommendations and the MEA position on management, can be found in the NHS Services Directory (which has recently been updated) on the MEA website.

The directory offers guidance that can help you decide if you should request or accept a referral to your local NHS specialist service. Careful consideration should be given to any subsequent advice to try either cognitive behaviour therapy (CBT) or graded exercise therapy (GET).

We have grave reservations about both therapies based on consistent patient feedback published in survey reports and from published research evidence and reviews.

CBT may help some people cope with the emotional consequences of living with a long-term condition – as it does for people with cancer and MS, for example – but it should never be considered as a treatment for ME/CFS.

GET is a form of activity management that can involve regimented exercise protocols that make many people with MECFS feel worse and can cause devastating relapses in health. GET is not recommended by the ME Association.

NHS specialist services do offer other forms of management advice including Pacing (where you try and balance activity with rest and listen to what your body is telling you) and practical tips that can help you live with ME/CFS. This is an approach that is recommended by the ME Association (see Section 4 below).

It is often the case of trying things for yourself and seeing if the advice provided by NHS specialist services can help, given your own particular circumstances. But it pays to be cautious.

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 topics 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, Hon. Medical Adviser to the ME Association.
It and can be downloaded here or from the website shop.

The ME Association

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