M.E. = Myalgic Encephalopathy/Encephalomyelitis
Myalgic = characteristic muscle symptoms. Encephalopathy = significant disorder of brain function.
Part 1: Who should manage people with ME/CFS?
Part 2: General principles of management
Part 3: Pharmacological treatments: general considerations
Part 4: Pharmacological treatments aimed at the underlying disease process
Part 5: Pharmacological treatments aimed at symptom relief: general considerations
Part 6: Supplements: vitamins, minerals and iron
Part 7: Non-pharmacological management:
- Activity management (Pacing)
- Graded Exercise
- The PACE Trial
- Sleep disturbance
- Orthostatic intolerance and hypotension
- Cognitive behavioural therapy
Part 8: Alternative therapies
Part 9: Other management issues:
- State sickness and disability benefits
- Dental care
- Diet and nutrition
- Disability aids/appliances and social care
- Employment and education
- Permanent health insurance and income protection policies
- Pregnancy and childbirth
- Relapse of exacerbation of symptoms
Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, explains the main symptoms of M.E. and possible treatments and management options, in a short video that was made by ME/CVS Vereniging.
ME Association clinical and research guide
The information in this section has been taken from An Exploration of the Key Clinical Issues:
- The 10th edition is a must-have for anyone who has been affected by – or has an interest in – Myalgic Encephalopathy/Encephalomyelitis (M.E.).
- It’s undergone a thorough, 6,000-word revision, is up to date, fully-referenced, and contains 147, A4-size pages.
- It features a thorough clinical evaluation and all relevant published research.
- Written by Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, and Dr Abhijit Chaudhuri, Consultant Neurologist, Essex Centre for Neurosciences, Clinical Issues is reviewed and revised on an annual basis.
- You can purchase a copy from our online shop or by contacting head office on 01280 818964 (Monday-Friday, 9.30am to 3.00pm).
Free copy available for health professionals!
We have funds set aside in our medical education budget to provide free copies of our clinical and research guide to GPs and other health professionals. Contact us with the details on the phone number above, or send head office an email.
Who should manage people with ME/CFS?
Provided the diagnosis is not in doubt, the management of early and less severe cases of ME/CFS can be carried out by general practitioners and other members of the primary healthcare team.
During the early stages (i.e. the first six months), this will involve giving appropriate advice about lifestyle modification and activity/energy management, providing symptomatic relief through the careful use of drugs and dealing with problems that may arise relating to employment, sickness and disability benefits and social support.
If the illness becomes more chronic and/or severe, consideration should be given towards referring the patient to a hospital-based ME/CFS service where there is a multidisciplinary team that is genuinely interested and informed about ME/CFS.
The ME Association believe that, while clinical services must be multidisciplinary, they should be physician-led.
In some parts of the UK, local multidisciplinary services have been established and permit easy access to dietitians, occupational therapists, physiotherapists, psychologists and other health professionals who can all play a useful role in the management of people with ME/CFS.
The ME Association website maintains a list of Clinical Network Co-ordinating Centres and Local Multidisciplinary Teams that were established in England with £8.5 million of funding from the Department of Health.
Unfortunately, there are still some parts of the UK – especially Wales, Scotland and Northern Ireland – where general practitioners are unable to locate a single hospital consultant with the necessary expertise in ME/CFS.
The situation in Scotland will hopefully change following initiatives that have been taken to provide separate clinical guidance to that produced by NICE (i.e. the Scottish Good Practice Statement on ME-CFS, NHS Scotland 2010) and following proposals for the establishment of hospital-based referral services.
The Countess of Mar has established through a House of Lords parliamentary question that people with ME/CFS can be referred to a specialist of their choice (House of Lords Debate, 24 June 2014, Volume No. 754 col. WA149).
Hospital in-patient facilities
When it comes to secondary care, there are very few hospitals with inpatient facilities to which severely affected patients can be referred for both clinical assessment and management (McDermott et al 2014) – although there is one exception:
The National Inpatient Centre for Psychological Medicine (NICPM) which offers an eight-bed specialist inpatient unit for people severely affected by ME/CFS. It is based at Leeds General Infirmary, and half the beds are for people from Leeds with the other half for other people from around the UK. They provide the inpatient care for the Leeds and West Yorkshire CFS/ME service.
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General principles of management
- It is important to provide advice, information and support from the onset – even before a firm diagnosis has been made.
- Decision-making should always be shared with the patient and be consistent with the General Medical Council guidance on informed consent.
- Ask about any other health professionals – conventional and alternative – who are currently involved with management, and record any medicines, homeopathic remedies, vitamins, supplements, etc. that are being taken
- Explain the range of management options that are available and ways in which specific symptoms might be relieved.
- What works for one patient may not work for another – so it is vital to match interventions to the needs and circumstances of the individual.
- Simple steps like keeping a diary over a four-week period may help to identify unhelpful approaches to activity management – e.g. cramming too much into ‘good days’ and paying the price on ‘bad days’.
- Discuss the possibility of relapses, how they occur and how to cope with them when they occur.
- Provide information and support on other key aspects of management, including state sickness benefits, education, employment, social care and nutrition.
- Provide information on other sources of support – charities, disability organisations, etc.
- Provide advice on prognosis that is both optimistic and realistic.
Also, the NICE clinical guideline on ME/CFS (2007) states:
|‘Shared decision-making between the person with CFS/ME and healthcare professionals should take place during diagnosis and all phases of care. The healthcare professional should:
‘Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.’
‘To facilitate effective management of the condition, healthcare professionals should aim to establish a supportive and collaborative relationship with the person with CFS/ME and their carers. Engagement with the family is particularly important for children and young people, and for people with severe CFS/ME.’
(Executive summary and recommendations, General Principles of Care, 2007)
|‘The symptoms experienced by patients with severe CFS/ME are diverse and debilitating, and these may fluctuate and change, both in type and in severity. It is therefore important that the management and care plan is flexible and reviewed regularly.’
(Chapter 7, People with severe ME/CFS)
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Pharmacological treatments: general considerations
A variety of drug treatments have been advocated for people with ME/CFS, but few have been subjected to well organised, randomised controlled trials (RCTs).
At present, there is no single drug treatment that has been shown to be consistently effective in alleviating the underlying disease process (a recent systematic review examined 35 randomised clinical trials that have evaluated pharmacological and non-pharmacological treatments for ME/CFS (Smith MEB et al 2015)).
There are, however, several ME/CFS symptoms or complications that can be helped by the careful use of drug treatments – e.g. pain, irritable bowel symptoms, sleep and depression (where it occurs).
In the absence of an effective form of treatment aimed at the underlying disease process, drug treatment should normally be focussed on relieving key symptoms with the aim of increasing functional capacity.
The NICE guideline on ME/CFS (2007) also states:
|‘…symptoms of CFS/ME should be managed as in usual clinical practice.’
(Symptom Management, 1.4.1)
People with ME/CFS are often more sensitive to the side-effects of drugs, particularly antidepressants, anaesthetics and those that act on dopaminergic transmission (e.g. metoclopramide/Maxolon).
Consequently, it is often advisable to start at a low dose followed by gradual increases over a period of weeks, especially when it comes to the use of antidepressant medication. The use of liquid preparations may also be a helpful alternative.
The 2008 ME Association Management Report
The ME Association carried out the largest-ever survey of patient opinion on all aspects of management including pharmacological symptom treatments, via an online and paper questionnaire, and over 4,500 responses were received. The full report is available to download and hard copies can be obtained from head office.
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Pharmacological treatments aimed at the underlying disease process
Pharmacological treatments aimed at symptom relief
⇒ General considerations
Although there are no proven forms of drug treatment for symptoms such as fatigue and cognitive dysfunction, there are several symptoms – irritable bowel symptomatology, nausea, pain, disrupted sleep – where drug treatment should be considered.
The following general principles should apply when using drugs to treat ME/CFS symptoms:
- Symptoms should be carefully evaluated, especially when they appear as new symptoms after a diagnosis of ME/CFS has been made, to ensure that they are not related to another condition.
- Where appropriate, non-pharmacological and self-help strategies should be tried first or combined with drug treatment.
- People with ME/CFS are often very sensitive to drug side-effects especially in relation to drugs that affect brain chemical transmitters. So treatment should normally commence with a small dose which is slowly increased until relief is obtained or a maximum dose is reached.
- Once a symptom has been under good control for a time, consideration should be given to reducing the dose. For most drugs, the aim is to use the minimum effective dose for the minimum period. However, there are exceptions – antidepressant medication being one example.
- Monotherapy is generally preferable to using more than one drug although this may become necessary in, for example, pain management.
> Symptom management
> Depression and mental health issues
> Irritable bowel symptomatology
> Neurally-mediated hypotension and Postural orthostatic tachycardia syndrome (PoTS)
> Pain relief
Respiratory and throat infections
> Sleep disturbance and restless legs syndrome
N.B. The (>) symbol provides a direct link to a relevant leaflet providing specific symptom information.
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Supplements, vitamins, minerals and iron
^ Our clinical and research guide – An Exploration of the Key Clinical Issues (2018) – see top of page, provides full details and all relevant published research relating to this topic, however the following leaflets are also useful:
N.B. The (>) symbol is a link to a leaflet providing further information.
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A. Activity Management
- Trying to achieve the correct balance between appropriate amounts of rest and activity, both physical and mental, is the most important aspect of ME/CFS management.
- However, it can be one of the most difficult to achieve. Finding the right balance will depend on the stage, severity and degree of fluctuation of symptoms that are being experienced.
During the very early stages of an acute onset of ME/CFS (i.e. within the first few weeks following a viral infection), patient evidence indicates that a period of rest, possibly including a period of bed rest, is advisable.
However, there have not been any research studies that have looked at the most appropriate and effective form of activity management in the very early post-infection stage of ME/CFS.
Ideally, this period of rest should then be followed by gradual and flexible increases in both physical and mental activity. At this stage, patients need to establish a baseline at which they feel comfortable and accept that progress may be both slow and erratic.
- Activities, physical and mental, should be carried out in small manageable chunks with a period of rest or relaxation in between. It is important to stop any form of activity before an exacerbation of fatigue or other symptoms occur. This advice is based on a management approach known as Pacing.
Balancing activity and rest is one of the most difficult aspects of managing your ME/CFS.
Dr Shepherd’s management file on energy management gives some guidance on how to achieve the right balance.
This leaflet is an introduction to Pacing, the system that helps many people with ME/CFS manage activity and rest.
- More strenuous activities should always be attempted with care and under medical guidance, preferably using a heart-rate monitor if progress has been good and the aim is to start to increase aerobic activity.
- Some patients find that the use of a pedometer – or similar device – can be a helpful way of monitoring and recording activity levels and any progress that is being made.
Activity levels should always be reduced during a relapse or exacerbation of symptoms.
- A doctor or physiotherapist needs to provide clear guidance on how to create a flexible management plan that accounts for day-to-day fluctuations in energy levels and symptoms, while remaining positive about recovery.
- Wallman et al (2004) reported varying degrees of improvement with an activity-based intervention based on Pacing. Kos et al (2015) compared the effectiveness of an activity pacing self-management intervention compared with relaxation. Satisfaction scores showed a significant difference in favour of activity pacing self-management.
- For a detailed review on pacing as a strategy to improve energy management, see Goudsmit et al (2012).
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Key Management Report: ‘No decision about me – without me’
During 2012, the ME Association carried out a survey which gathered detailed patient evidence on all aspects of CBT, GET and pacing, including efficacy, safety and acceptability. The online and paper questionnaires were completed by 1,428 respondents.
The data and our recommendations were published in a comprehensive report in 2015 and have formed a key part of subsequent research that has analysed patient feedback on the management approaches adopted by NHS clinics as a result of the NICE guideline.
Key findings: for courses which included no overlap with other forms of treatment:
- CBT: 8% reported an improvement in symptoms; 73% reported no change; 18% reported that symptoms became worse.
- GET: 12% reported an improvement in symptoms; 14% reported no change; 74% reported that symptoms became worse.
- Pacing: 45% reported an improvement in symptoms; 41% no change; 14% reported that symptoms became worse.
- CBT should not be recommended as a primary intervention for people with ME/CFS. When used appropriately, the practical coping component can help some patients come to terms with their illness. CBT can also be helpful for some patients who have co-morbid anxiety or depression.
- GET cannot be regarded as a safe and effective form of treatment for everyone with ME/CFS. GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.
- Pacing was consistently found to be safe, acceptable and the preferred form of treatment. Pacing should therefore be a key component of any illness management programme.
B. Graded Exercise
- Inflexible graded exercise programmes that involve a progressive increase in aerobic physical activity on a day-to-day basis regardless of how a patient is coping are not recommended as they are likely to have a detrimental effect (Shepherd 2001b).
- Results from several RCTs into the use of various graded exercise programmes (Fulcher and White 1997; Moss-Morris et al 2005; Powell et al 2001; Wearden et al 1998), as well as the PACE trial (White PD et al 2011), are frequently used to claim that pacing programmes are not the best way of managing people with ME/CFS and that a more proactive approach involving graded exercise is required.
However, we believe that appropriate periods of rest are just as important as gradually trying to increase physical and mental activity, within a person’s limitations, once the condition has started to stabilise.
- In patient feedback that was obtained by the ME Association and other ME/CFS charities for the report to the Chief Medical Officer (2002):
- 89% reported that they found pacing “helpful” whereas only 35% found graded exercise to be “helpful”
- almost 50% said graded exercise had made their condition “worse”, and 15% reported “no change”
- In the survey conducted for the ME Association Management Report (2010):
- 71.2% reported that pacing “improved” or “greatly improved” their symptoms, whereas,
- 56.5% reported that graded exercise made them “slightly worse” or “much worse”
- From a research perspective, it should also be noted that an American study (Lapp 1997) confirmed that inappropriate advice about exercise can easily produce a rapid and quite severe exacerbation of symptoms.
Two studies that have examined the possible role of physical deconditioning, upon which graded exercise programmes are often based, concluded that deconditioning does not appear to be a perpetuating factor in the illness (Bazelmans et al 2001; Schmaling et al 2005).
- Black et al (2005) concluded that while ME/CFS patients were able to increase their daily activity over a period of four weeks this did not result in improvements in fatigue, muscle pain and mood. They concluded that a daily activity limit does exist in this condition.
- Data from Neary et al (2008) suggests that altered cerebral oxygenation and blood volume may contribute to reduced exercise load in ME/CFS and supports the contention that the condition is centrally mediated.
From the medico-legal point of view, doctors who prescribe exercise programmes for ME/CFS patients must do so with just as much care as they would a prescription drug.
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C. The PACE Trial
- PACE stands for adaptive Pacing, graded Activity and Cognitive behaviour therapy: a randomised Evaluation.
- The PACE trial was a parallel group trial that randomly allocated patients to receive either specialist medical care (SMC) alone or in combination with adaptive pacing therapy (APT), cognitive behavioural therapy (CBT) or graded exercise therapy (GET).
|The trial concluded (White PD et al 2011) that CBT and GET can be safely added to SMC to moderately improve outcomes in ME/CFS but that APT was not an effective addition.|
- However, various aspects of the way in which the PACE trial was organised, the manner in which the results were then reported in both medical journals and the media and the way in which recovery was defined and reported have been criticised by patients, ME/CFS charities (Shepherd 2013; Shepherd 2016; Stouten et al 2011) and political representatives – the latter resulting in a debate in the House of Lords.
Among the many criticisms directed at the PACE trial are that it was unblinded, that it relied on self-reported outcome measures, that it lacked objective outcome measures covering key aspects of recovery, such as mobility (i.e. the use of the six-minute walking test rather than actigraphy), and that the data on the one objective outcome that was used was disappointing (i.e. there was an increase in disability payments to people in all three interventions).
- The following comment, which is very relevant to the recommendation for graded exercise therapy in the PACE trial, comes from a paper from Brown AE et al (2015) on the role of peripheral (muscle) abnormalities in ME/CFS:
|‘Recent studies suggest that graded exercise therapy (GET) has benefits for patients with CFS although these benefits have been small. Frequently patients with CFS feel that exercise in fact makes their symptoms worse.’
‘Our recent MRS studies suggested that there were at least two muscle phenotypes grouped together through the entirely symptom-based diagnostic classification of CFS. This might explain, in part, the limited benefits seen in the PACE trial for GET.’
‘We believe that the results of the current study further emphasise the potential for a peripheral component to CFS and the need to fully characterise the muscle phenotypes in CFS before generically prescribing exercise as an effective intervention.’
‘Further work is needed to understand the muscle biochemical abnormalities in CFS and the impact that exercise might have upon these.’
- At the same time, patient evidence continues to strongly support the use of pacing in terms of both effectiveness and safety.
The ME Association continues to recommend Pacing as the preferred approach to activity management.
- Following the outcome of a Freedom of Information Tribunal, which resulted in release of unpublished data from the PACE trial, the data on recovery has been re-analysed by Wilshire et al (2017) who concluded:
|‘The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.’|
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D. Sleep Disturbance
- During the early post-infectious stage of ME/CFS, many patients experience hypersomnia where they report a requirement to sleep for much of the day as well as at night.
- Once this phase of hypersomnia starts to diminish, patients should be encouraged to adopt simple self-help measures, such as keeping a sleep diary, which should help to reduce the chance of other types of sleep disturbances developing.
- Self-help measures can include, where appropriate:
- Avoiding excessive amounts of caffeine-containing stimulants such as tea, coffee, chocolate and cola drinks, during the four to six hours before going to sleep.
- A heavy meal shortly before bedtime will delay sleep, but having an empty stomach can also interfere with sleep.
- Foods containing a chemical called tyramine (e.g. bacon, cheese, nuts), which causes the release of the brain stimulant noradrenaline, can keep people awake at night.
- Carbohydrates have the opposite effect and make people sleepy due to the release of serotonin.
- Dairy products contain tryptophan – a natural sleep inducer – so a glass of warm milk, and possibly a light snack, is worth trying.
- Trying to avoid sleeping in the afternoon – if possible – this should be replaced with a period of rest/relaxation if necessary.
- Trying to establish a regular routine for waking up, getting up and going to bed at around the same time each day.
- Having a warm bath about an hour or so before going to bed will raise the body temperature. Afterwards, the fall in temperature may help to cause sleepiness.
- Making sure the bed and bedroom are not too hot (otherwise it will prevent core body temperature from going down, which is essential for switching on the ‘sleep mechanism’) or cold (which causes restlessness). The ideal bedroom temperature should be around 18-21 degrees Celsius.
- Keeping the bedroom as a ‘worry free’ zone for the purpose of relaxation, rest and sleep.
- Stabilisation of the circadian rhythm can be helped by remaining in daylight or fairly bright indoor light during daylight hours, possibly using melatonin about two hours before bedtime and avoiding bright lights at night.
> We also have a leaflet that looks at how sleep patterns can change in people with ME/CFS and what type of sleep disturbances commonly occur. It gives guidance on how sleep disturbance can be treated. Also included is information on Circadin (prescription-only melatonin) plus an item on Restless Legs Syndrome.
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E. Orthostatic Intolerance and Hypotension
Orthostatic intolerance affects most people with ME/CFS to some degree and can become a very disabling part of their illness. Simple self-help measures that can be useful include:
- Activity management that aims to improve peripheral circulation.
- Advice about how to move from lying to standing.
- Physical/postural counter manoeuvres: hand-grip, leg crossing, muscle tensing.
- Orthostatic training. NB: A recent feasibility study (Sutcliffe et al 2010) found that home orthostatic training was well tolerated and generally complied with. See also Tan MP et al
- Drinking plenty of decaffeinated fluids and avoiding alcohol. Water intake may need to be significantly increased, which can be difficult to accept. It can be explained that increasing fluid intake is acting as a medicine to refill the cardiovascular system.
- Avoiding heavy meals.
- Cautious increase in salt intake in those who have low blood pressure.
- Avoiding excessive heat.
- Use of support stockings.
- A set of actions to take if the person feels faint or if a faint occurs.
> Symptoms of orthostatic intolerance are nearly always influenced or exacerbated by anything that diverts blood away from the brain or causes fluid loss from the body. Our information leaflet on this topic might be useful.
> A small but significant minority of people with ME/CFS also have a condition called Postural Orthostatic Tachycardia Syndrome (PoTS). But it often remains undiagnosed because of lack of knowledge amongst health professionals. This information leaflet may be useful to help determine if you are suffering from PoTS and as something to discuss with your doctor
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F. Cognitive Behavioural Therapy
- CBT is an aspect of management that causes considerable controversy – largely because of the various ways it is administered in the case of ME/CFS.
- At the one end of the spectrum, CBT is used – as it is with many other chronic medical conditions – to help people develop better ways of coping with symptoms such as fatigue, pain, or sleep disturbance, with a clear acceptance that these have a genuine physical basis.
- This coping approach may, therefore, be helpful to patients who are not managing their lifestyle adjustment in an appropriate manner or where there is depression or psychosocial distress complicating the clinical picture.
- At the other end of the spectrum, CBT is a therapy based on the idea that ME/CFS is essentially a psychological illness that may well be triggered by an infection but is then perpetuated by a vicious circle of abnormal illness beliefs and abnormal illness behaviour – both of which need to be addressed and challenged if recovery is going to occur.
- Not surprisingly, this is an approach that many patients find both inappropriate and offensive.
- A number of clinical trials involving the use of CBT, including the PACE trial, have shown that this approach can sometimes be of some help to some people with research-defined CFS (Deale et al 1997, 2001; Prins et al 2001; Sharpe et al 1996; Stulemeijer et al 2004).
- However, in other trials, CBT has produced little or no benefit overall (Friedberg and Krupp 1994; Huibers et al 2004; Lloyd et al 1993; O’Dowd et al 2006; Whitehead and Campion 2002) or has not benefitted a significant proportion of patients (Akagi et al 2001).
- CBT has also been reported to have an effect on heart-rate variability (Hansen et al 2013). For some people with ME/CFS who require this sort of help, straightforward counselling is an option that has been reported as being a cost-effective alternative to CBT (Ridsdale et al 2001).
- In patient feedback obtained by the ME Association and other ME/CFS charities for the report to the Chief Medical Officer (2002):
- only 7% of patients found CBT to be “helpful”
- 26% said it made their condition “worse”, and
- 67% reported “no change”.
- In the survey done for the ME Association Management Report (2010):
- 25.9% reported that CBT had “improved” or “greatly improved” their symptoms
- 54.6% reported “no change”, and
- 19.5% reported that CBT had made their condition “slightly worse” or “much worse”.
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Even though people with ME/CFS frequently report that alternative and complementary therapies have been helpful, there are others who spend large sums of money on highly speculative treatments and gain no benefit at all.
As with many other conditions, there is very little evidence from well-conducted clinical trials into the efficacy of alternative treatments – one exception possibly being homeopathy (Weatherley-Jones et al 2004).
A systematic review of 26 randomised controlled trials involving the use of complementary and alternative medicines in ME/CFS (17 studies assessed supplements) provided limited evidence for their effectiveness in relieving symptoms (Alraek et al 2011).
Approaches such as acupuncture and homeopathy may be worth trying if a person has faith in them and can find a reputable practitioner. But there is no evidence to support the use of anti-candida regimes or taking megadoses of vitamins or minerals.
Experience has shown that patients with ME/CFS often do well when they are in regular contact with an understanding physician or a therapist.
This benefit is not necessarily due to the effect of the pharmacological treatment or other interventions and is often lost once the contact is no longer maintained.
This may help to explain why some of the expensive courses involving talking therapies that are promoted by the alternative and complementary sector report beneficial results in some patients.
> We have a leaflet that looks at the pros and cons of the most popular alternative treatments on offer for ME/CFS – from Acupuncture to Yoga (with important advice on how to seek out the best practitioners).
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Other management issues
A. State sickness and disability benefits
- The Department for Work and Pensions (DWP) has made it clear that people with ME/CFS are entitled to apply for a full range of sickness and disability benefits.
- Furthermore, entitlement to individual benefits is supposed to relate to whether the claimant’s functional disablement or their care and mobility needs satisfy the qualifying criteria rather than relate to the diagnostic label.
- However, people with ME/CFS often have great difficulty in obtaining benefits such as Employment and Support Allowance (ESA) and Personal Independence Payment (PIP).
- If they have a good case, they should be encouraged to appeal – there is a high rate of success (around 40%) on appeal, especially when claimants supply sound supporting medical evidence and attend the appeal in person to put their case. Representation from the Citizens Advice Bureau also helps to increase the success rate at appeal.
- Disability Living Allowance has been replaced for all new claimants by Personal Independence Payment (PIP). This is still a benefit for people who require help with care and/or mobility. People currently claiming Disability Living Allowance are being re-assessed for PIP to see if they meet the eligibility criteria for it.
As with ESA, the terms “reliably, repeatedly and safely” play a key role in the medical assessment and in the application forms.
- PIP is a non-means-tested, non-taxable, cash payment to help with the cost of living with a long-term condition. PIP has two components covering daily living (standard and enhanced rates) and mobility (standard and enhanced rates).
Regarding whether claimants could lose benefit entitlement by refusing to participate in a CBT or GET programme:
This was raised during the Committee Stage of the Welfare Reform Bill by the Countess of Mar.
In reply, Lord McKenzie of Luton (Parliamentary Under-Secretary, DWP) stated (House of Lords Debate, 28 February 2007, Volume No. 726 col. GC198), said:
‘There is no requirement for individuals to carry out any specific type of activity or treatment. That cannot be sanctioned.’
Additional help from the ME Association:
> Our guide to Employment and Support Allowance (ESA) has been fully revised to reflect the changes in the application form that was published by the Department for Work and Pensions in April 2017, and will help anyone with ME/CFS understand what is required.
> If you are not successful with your application, don’t give up. Many people unfortunately have to make additional efforts to obtain what they deserve. Our guide to Reconsiderations and Appeals will help explain the different processes, how to make a claim, and what will be required.
> This leaflet provides a general overview of benefits that you may be able to obtain. These include Statutory Sick Pay, Employment and Support Allowance (ESA), Income Support, Industrial Injuries Disablement Benefit, Jobseeker’s Allowance, Working Tax Credit, Disability Living Allowance, Attendance Allowance, Child Tax Credit, Travel and Parking Concessions and Road Tax Exemption.
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B. Dental care
- People with ME/CFS should have regular dental check-ups because tooth or gum disease/infection can cause a relapse or exacerbation of symptoms.
It should be noted that domiciliary dental services are available through the local Community Dental Service for people who are housebound with more severe ME/CFS.
- There is no evidence that removal of dental amalgam fillings, which can be quite costly and traumatic, is an effective form of treatment for ME/CFS.
- Some people with ME/CFS may be sensitive to dental anaesthetic injections containing adrenaline, and the use of an adrenaline free anaesthetic (e.g. Citanest) may be advisable.
> We have an information leaflet, written by our Dental Adviser, Dr Richard Cantillon, which covers common dental questions, from “What kind of toothpaste should I use?” through to subjects that continually come up in conversation, like the use of local anaesthetics, antibiotics and mercury fillings. Also included is a section that covers dental anaesthesia in more detail.
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C. Diet and nutrition
- A well-balanced diet that includes complex carbohydrates (to help stabilise blood sugar levels) and avoids caffeine should be advised.
- Small regular meals throughout the day can also be helpful in maintaining a steady level of blood sugar.
Vitamin D supplementation, together with encouraging the intake of foods high in vitamin D – including oily fish, such as salmon and sardine, eggs and fortified breakfast cereals – should be considered in patients who are at risk of deficiency due to being housebound and lacking exposure to sunlight.
- Supplementation is also worth considering in post-menopausal women because of a higher risk of osteoporosis associated with ME/CFS.
- Serum calcium should be regularly monitored in anyone taking pharmacological doses of vitamin D.
A good fluid intake should also be encouraged, especially for those patients who have symptoms related to hypotension. Alcohol should be avoided – as most symptomatic patients with ME/CFS have alcohol intolerance.
A Healthy Diet in ME/CFS
> We have produced a leaflet that explains how a good diet can help improve the health of people with ME/CFS. It is written by ME Association diet and nutrition adviser Sue Luscombe and consultant dietitian Michelle Dobrota-Gibbs:
- It helps answer questions such as, ‘Is my diet important for ME/CFS?’ and explains how someone with M.E. might maintain a healthy diet. It also examines why weight changes might occur and asks ‘How do I know if I have a food intolerance or allergy?’
- And it talks about the importance of the microbiome, orthostatic intolerance and POTs, and provides an extensive list of further reading resources.
> In 2016 NHS England updated its advice relating to the taking of Vitamin D encouraging everyone to consider doing so in the Autumn and Winter months:
- We took the opportunity to produce a useful review that included specific recommendations for people with ME/CFS with useful links to relevant resources, including our own leaflet on Vitamin D deficiency.
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D. Disability aids/appliances and social care
- Consideration should be given to any aids and appliances that could be helpful, especially in relation to improving mobility.
- Sources of financial help – e.g. Disabled Facilities Grants – may also be available where appropriate.
- Those who are severely affected should be advised on various aspects of social care and support that may be available and on how to apply for these services, grants, etc.
The NICE clinical guideline on ME/CFS (2007) states:
‘If your symptoms are moderate or severe, your team should consider if you need any equipment or adaptations to improve your quality of life or independence, such as a wheelchair, blue badge (for parking concessions) or stair lift.’
‘This should be done as part of your overall management plan, taking into account the benefits and any possible risks to you individually.’
- People with ME/CFS may be eligible for a Blue (parking) Badge.
- It should be noted that official government guidance on Blue Badge eligibility is sometimes being misinterpreted by local authorities to mean that people with ME/CFS cannot be granted a Blue Badge.
- While there is no automatic right to a Blue Badge, people with ME/CFS can qualify if they meet the criteria relating to mobility.
Additional help from the ME Association:
> If you are disabled and need to make changes to your home, you could be eligible financial help in the form of a Disabled Facilities Grant (DFG) from your local council. This leaflet will explain how you can qualify and the kind of adaptations you might consider making to your home.
> Our popular, ‘to whom it may concern’, letter from Dr Charles Shepherd, can be used as supporting evidence for the provision of disability aids such as wheelchairs and adaptations within homes.
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E. Employment and education
- A sudden return to full-time employment or education is normally unrealistic.
- It may therefore be necessary for a GP to become involved in negotiations aimed at ensuring a more gradual or flexible return to normal activities for those who have managed to achieve a substantial degree of recovery.
- The Disability Discrimination Act 1995 and the Equality Act 2010 may be relevant here.
Unfortunately, many people with ME/CFS are unable to return to their previous employment/educational activities, or attempt to do so and find that they are unable to perform at a satisfactory level or on a sufficiently regular basis.
For those who remain severely unwell and are unable to resume employment, the possibility of early retirement on the grounds of permanent ill health may need to be considered.
- Students may be able to access various types of practical and financial assistance and should be made aware of the Disabled Students’ Allowance.
Additional help from the ME Association:
> This detailed leaflet provides information and advice about stopping work or cutting back hours, keeping in touch with people at work while off sick, and negotiating a possible return to work. It also looks at work-related benefits, other types of practical and financial help that may be available, early retirement on the grounds of ill-health, and how the Disability Discrimination Act and Equality Act relate to ME/CFS.
> Do you have a company pension and need to retire early? This leaflet examines the problems involved, and gives sources of further information. If you are still at work and are thinking about joining the company’s pension scheme, it is a must. Also included is Prognosis and Permanency, our fully-referenced leaflet which tackles the problematical question: “Is my ill health and disability likely to be permanent?”.
> Leaving home and heading off to university can be a daunting time for any person, particularly for those with a fluctuating condition like M.E. This leaflet explains how someone with M.E. – with a little advanced planning – can help make a successful start to their time at university. It’s written by lifestyle blogger Pippa Stacey who had to discover what worked best while she was there.
> For students taking exams we have produced a ‘to whom it may concern letter‘, that summarises the special arrangements which may need to be planned ahead of time, so they can make the best use of their potential and the special considerations that may be required in the marking process.
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F. Permanent health insurance and income protection policies
Patients who become involved with disputes involving insurance companies can contact the ME Association for information on medical and legal presentations that were made to the All Party Parliamentary Group on ME on this issue.
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G. Pregnancy and childbirth
Some women with ME/CFS fear that pregnancy may worsen their condition or threaten the health of their unborn child. However, a study into pregnancy and ME/CFS has produced some generally reassuring conclusions (Schacterle and Komaroff 2004):
|‘During pregnancy, there was no change in CFS symptoms in 29 (41%), an improvement of symptoms in 21 (30%), and a worsening of symptoms in 20 (29%) of 70 subjects.’
‘After pregnancy, there was no change in CFS symptoms in 21 (30%), an improvement of symptoms in 14 (20%), and a worsening of symptoms in 35 (20%) of the subjects.’
‘The rates of many complications were similar in pregnancies occurring before the onset and in those occurring after the onset of CFS.’
‘Pregnancy did not consistently worsen the symptoms of CFS. Most maternal and infant outcomes were not systematically worse in pregnancies occurring after the onset of CFS.’
> Our leaflet on pregnancy and childbirth considers some key questions, such as: what are the effects of pregnancy and childbirth on ME/CFS? Is the baby at risk? How do you cope after the baby is born?
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H. Relapse or exacerbation of symptoms
Patients need to be aware of factors that can exacerbate symptoms or cause a relapse:
- Alcohol intolerance is extremely common (Woolley et al 2004) – a factor that is normally recognised quite quickly and accepted.
- Immunisations appear to be capable of both triggering the syndrome as well as causing a relapse (Shepherd 2001a) although, as yet, there is no clear evidence from prospective and retrospective studies (Appel et al 2007). A number of anecdotal cases, often in health workers, have followed hepatitis B vaccination.
When immunisation is considered necessary, it should be arranged at a time when the patient is feeling reasonably well, especially in relation to flu-like symptoms (i.e. sore throats, tender glands, feeling feverish). Travel vaccines should not be given immediately before departure if possible.
- Intercurrent infections often produce a fairly rapid deterioration in symptoms, and patients may well find that it then takes weeks, or even months, to return to ‘normal’ levels of activity.
- Surgery and general anaesthetics may produce a relapse. So routine procedures should, if possible, be arranged for a time when the person is well and when practical help in the home can easily be arranged for the postoperative period. Consideration obviously will need to be given to the pre- and post-operative prevention of venous thrombosis in patients with reduced mobility.
- Disturbed thermoregulation means that temperature extremes should be avoided although a holiday in a warm sunny climate may well have its benefits.
- Any form of stress is likely to have an adverse effect on recovery patterns or cause a relapse/exacerbation of pre-existing symptoms.
A return of symptoms can sometimes occur after a significant period of remission.
Additional help from the ME Association:
The ME Association
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