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Tel: 01228 562988
The Universities of Central Lancashire, Northumbria and Complementary Therapies
Manchester Metropolitan are working together to improve access to information which will help ME/ CFS sufferers both The acceptable therapies are known as the big 5 and are: nationally and specifically in North Cumbria. The work has been made possible through a Government The project specifically supports ME North East, the regional support organisation that covers North Cumbria. The part-ners however also work collaboratively with other ME organi- There are also some which are recognised but lack scientific sations, the multi disciplinary teams and local interested oth- As well as this booklet an information portal has been devel- formation is provided for information purposes and you should seek guidance for any treatment from your GP or Also we would like to thank specifically Alice Bondi and Gail Stevens who have provided additional material for incorpora- tion in both the booklet and the website. The file is available as a pdf and other support groups in the country are wel- come to apply to use the text in the booklet and adapt the local information to their needs. Applications should be Very little research was done in this area by NI CE who re- made to Linda Danielis on 01228 562988 or to the webmas- port that none are recommended. However sufferers do spend large amounts on complementary and alternative medicines and the ME Association comment that a proper The intellectual property in this document is owned by review of the pros and cons should be conducted. Some are more dubious than others, and some such as acupuncture are supported by clinical evidence in being effective at pain relief. Conventional techniques which help with relaxation or gentle exercise are not likely to be harmful and can improve management of the condition on a daily basis. Even simple breathing exercise can help. Pharmacological Treatments
There are no magic drugs available to cure ME/ CFS. How- Earlier diagnostic criteria have included the Fuduka et al re- ever, some of the symptoms of ME/ CFS can be helped with search definition, the Oxford Criteria, and Ramsey’s descrip- drugs or medicines e.g. headaches, sore throats and diges- tion of ME. The most recent research definition by Hyde tive difficulties often involving wheat or dairy products. No (2007) was prepared following meetings in London at the remedies are effective with every sufferer. time of the Gibson I nquiry, (2006) a parliamentary group There are conflicting views about the effectiveness of pre- scription drugs and the quantities in which they should be taken. The Hyde definition argues that ME is a different illness from CFS. ME is a clearly defined disease and differs from Chronic NI CE detail that drug treatment should be tried at lower doses than would be normal in clinical practice and only in-creased gradually if tolerated by the patient. PWME have The purpose of a medical definition is to enable an accurate chemical sensitivities which may mean that they are more diagnosis by the clinician in order that effective treatment likely to adversely react to prescribed medicines. Different can begin. The exclusion of illnesses with similar symptoms authors vary in terms of their recommendations on the must be able to occur and researchers and clinicians can agree what they are talking about which will enable both effective research into the illness and treatment. The lack of Bagnall et al reported that the only drug they tested to be biomedical research funded by the UK Government is seen helpful was oral NADH, and this helped with the quality of to be a problem which makes life worse for the ME sufferer. The Nightingale Research Foundation defines ME as “an Carruthers et al detail a number of different drugs which acute onset biphasic epidemic or endemic (sporadic) infec- may be prescribed for different aspects of the condition but tious disease process, where there is always a measurable there is not agreement among authors as yet. Small quanti- and persistent diffuse vascular injury of the CNS in both the ties of Amitriptyline can help with sleep due to its sedative acute and chronic phases.” I t is also associated with other affects and some studies suggest Ampligen may help. There are two phases, the first phase being the infection ME North East, Bullion Hall
stage and the second the chronic phases which appears within two and seven days and involves a change on the function of the Central Nervous System. The sufferer will Brain Findings
Yeast infection
Changes in the brain can be observed through SPECT scans or through a PET scan with appropriate software. Either one White and Sherlock, nutritionists, looked at the role of yeast or both sides of the cortex may be injured and there are infection (candidasis) in CFS. Patients have been found to benefit from an anti-candida protocol although the relation-ship between candida and CFS/ ME was not shown to be Brain Fog
causal. The study had a low sample of 18 completing partici- There are also neuropsychological changes which include pants and as such is too small to make recommendations. problems with short-term memory and brain fog. There can also be difficulties with recall and reasoning. There are also problems with sleep dysfunction, loss of strength with mus- Other medical guidance suggests that one should only con- cle function after mental or physical activity, vascular and sider candida when there is an obvious infection in the geni- cardiac dysfunction, orthostatic intolerance referred to by the acronym POTS, cardiac irregularity, Raynaud’s phenome-non, a decrease in circulating blood volume, bowel dysfunc- Irritable Bowel Syndrome
tion and the Ehlers-Danlos Syndromes Group which is a group of illnesses where there is a genetic predisposition to Marshall and Williams (2006) detail that 92% ME sufferers also suffer from I BS. Sometimes it may be difficult to deter-mine what is causing changes in bowel habits and Amitrip- Clinicians who have observed the findings include Behan, tyline can cause constipation and oily fish can cause a loos- ening of the stools. However sufferers may also have bloat-ing or large amounts of wind. Because the definition allows for testing of the symptoms an earlier diagnosis is possible and appropriate treatment for Much of the dietary guidance for I BS is similar for ME/ CFS aspects of the condition becomes more possible. e.g. drinking water, avoiding caffeine and fizzy drinks. Pep-permint and fennel may help and of course can be drunk as The key point about Nightingale's definition is that fatigue is not a major criterion of the disease. I t is however the case that if something is wrong then there is likely to be a loss of I n addition NI CE found that peppermint oil supplements stamina and fatigue, but focussing on the fatigue by clini- could help with bloating. There is a suggestion that milk cians is a case of looking at the wrong aspect of the condi- may be a problem for some people. One I BS source you tion , and this can lead to inappropriate treatment sugges- may find helpful is The Sufferers’ Guide to Coping with I BS, 1996, published by Central Middlesex Hospital NHS Trust (c/o PO Box 18, Crowborough, East Sussex, TH6 1ZY). Hospi- I t is the pathophysiology of the disease, not the label which tals and dieticians should be able to provide diet sheets. The suggestion is that most of the suggested supplements Supporting Medical Services
have not been evaluated in clinically controlled trials. Be-cause many supplements, even if they are made of natural Pharmacies
products, may cause side effects and interfere with pre- Whilst it is recognised that some doctors have in house scribed medicine it is wise to consult your clinician before pharmacy services, there are also private pharmacies that not only offer a public health role but also other health care products that sufferers may wish to buy to help with NI CE’s current position is that there is insufficient evidence symptom management. Most pharmacies are listed with their Primary Care Trust in order that they can dispense NHS prescriptions. Their details can be found on the NHS I deally you should contact a dietician for guidance if you are website. A change in contracts in April 2005 has enabled going to change your diet. However, some alterations are easily made with beneficial effects. Alcohol avoidance is easy and many ME/ CFS sufferers no longer tolerate or look Pharmacists are able to deal with lifestyle and minor ill- nesses and can offer guidance on increasing physical activ-ity and improving diet. They are also able to signpost con- Food Sensitivities
sumers to other health and social care providers. In terms of drinks guidance to avoid caffeine, either drink I n order to find a pharmacy go to the NHS website at decaffeinated tea and coffee or replace with water. Fruit and enter your post code under the nearest teas may be consumed but are not good for the teeth. Fizzy drinks containing caffeine are easily avoided. Studies recommend the avoidance of alcohol, caffeine (also Occupational Health
in chocolate), aspartame, monosodium glutamate, processed Many sufferers will have to deal with occupational health physicians as part of their illness either to ensure they stay in work, made possible for some under the Disability Dis- Some sufferers find sensitivities on eating gluten based products, Rice cakes and corn snacks can be eaten as sub-stitutes and Dove make a gluten free flour which can be used in home baking. Invest in ME, 18 Claremont Gardens
There are also gluten free ranges in major supermarkets and products such as pasta can be made from non wheat ingre- Fitness For Purpose
Diet and Nutrition
A number of requirements exist when a person’s condition is Some severely affected patients need to be fed by tube for a assessed for fitness for purpose. This may be under the em- variety of reasons including having a poor appetite, finding it ployee’s organisation’s capability procedure. The require- difficult to suck or chew, being weak etc. Should nutrition and hydration be an issue then guidance will come from the primary care clinician. Assessing the prognosis (likely recovery and future em- Supplements
Cheney and Loblay have detailed in separate studies that some patients have food sensitivities. A number of studies suggest that about 50% of sufferers may be deficient in magnesium, a trace element. NI CE found in a small study that magnesium supplements had positive effects, supported also by Bagnall et al. Occupational health physicians may ask for access to your medical records. Under the Access to Medical Reports Act Many providers recommend a number of nutritional supple- 1988 which deals with reports that are either provided for ments which include vitamins, minerals and herbal remedies. insurance, employment or health purposes, you are given a I t is difficult to evaluate their effectiveness and some may be harmful e.g. too much vitamin A can contribute to mus-culoskeletal pain. Withhold consent for your records to be accessed You may request sight of a report written after a third Olin recommends trying one supplement at a time and test- party has requested it and have 21 days to approve it. You ing for three months for effectiveness. Behan suggests eve- ning primrose oil may help. Puri, a fatty acid specialist rec- You can approve an application to your records and indi- ommends a fatty acid supplement combined with evening cate that you are happy for it to be supplied. I f you are looking for an expert witness please speak to a NADH (Enada) may also help in CFS and 5-HTP may help with sleep and depression. Although it is suggested that mood, energy and cognitive functioning may be improved I n practice you are probably at your most ill when you can- the study involved only 26 patients and concern has been not access occupational health guidance as you are off work. expressed that the results may not be reliable. Co enzyme 10, vitamins A and C have also been recommended by some authors. Yellow sunglasses/ yellow file pockets
Carruthers et al recommend the following: Some sufferers are troubled by reading and glare. Cheaper than printing everything onto yellow paper, it is possible to buy yellow A4 file pockets from stationers such as Viking Conduct structured interviews periodically throughout the Nightvision glasses reduce glare and make reading less Use questionnaires and scales for functional assessment Environment modifications
When deciding on targets it is important to take into account Some people will require adaptations to their immediate en- what the sufferer can do and the fluctuating nature of the vironment in order to help them to cope better. Occupational therapists, physiologists and disability organi- sations may give guidance on house adaptation should users need a wheelchair, stairlifts to go upstairs/ downstairs and Because of the fluctuating nature of the illness consideration other assistive aids needed in the home. must be given to the long term situation. Overdoing things either mentally or physically can lead to a relapse. Pain, fa- FE/ HE students may be helped by their disability officers to tigue and cognitive difficulties affect concentration and al- access assistive technologies which will help with dyscalculia, though some activities can be carried out in the short term, too much activity causes problems meaning the sufferer has to rest in order to recharge the batteries. Where pacing can Loughborough University give a review of some of the help be built into daily activities as part of reasonable adjustment the ability to cope increases. The more a sufferer can con- trol their workload, the more likely they will be able to cope Holiday Care give information for the disabled and list a I n order to effect reasonable adjustment to fulfil the em- ployer duty under the Disability Discrimination Act. Car- ruthers et al recommend that the job role is assessed for specific aggravators in order that tasks can be varied, ergo- nomics are improved and flexibility in scheduling is built in. Treatment/Therapy Descriptions
Difficulties exist in terms of recommending treatments, as However pacing, an energy management therapy is ac- currently symptoms can be managed but there is no cure. cepted by the ME community. The recommendation is that Many providers may suggest they have the answer but there activity is moderated in order not to overdo things and ex- is a lack of evidence through controlled trials to support the perience a relapse. I t is particularly important in the early stages of the illness before it is confirmed that the patient rests. I f large energy grabbing activities have to be done This section will outline some of the treatment types avail- they should be broken down into manageable tasks, with able and may refer to products but the details are provided for information only. Any treatment undertaken should be under the guidance of a qualified professional clinician. Pacing can be used differently by different clinicians to mean different things e.g. adaptive pacing theory (APT) is the no- National ME groups review a variety of suggested treat- tion of incremental pacing, that of gradually increasing the ments and therapies on an ongoing basis. The NHS recog- tasks done on a daily basis. This is one approach being con- nises the role of the Expert Patient and the important part they play in the management of their condition. Whatever treatment regimes are followed a sufferer must listen to their own body and take account of early warning signals Activity does not just include physical activity but mental and and a pending crash by resting before a relapse occurs. emotional as well. I f doing too much activity results in pay-back the learnt behaviour is to adapt for the future, learning It is also worth noting some of the opposing views regarding some of the treatments and therapies which are recom-mended by providers and contextualising the debate. There It is impossible to programme all of the physical, mental and are different approaches to understanding illness generally emotional activities that a sufferer will partake in on a daily and ME/ CFS in particular. The conventional approach is a basis and self management requires adaptation of behaviour reductive one and underpins NHS treatments. I t sees hu- according to how one feels at that time and what one can mans as composed of parts - mind and body, with each di- vided into sections. Each different aspect is treated by a different specialist. I n the case of ME/ CFS there are a wide With a variable condition it is important that appropriate sig- variety of different specialists in the multi disciplinary teams. nals and signs are taken into consideration to constrain ac- When both body and mind are involved conventional medi- tivity until such time the body allows for more normal activi- cine speaks of psychosomatic issues. This appears to sug- gest that something is not real but “all in your mind” and this is the approach that many ME/CFS sufferers have had to The ME sufferer is the expert patient and as such should be at least equal in any illness management strategy. Improving symptoms, e.g. fatigue and muscle An alternative view which is the holistic view argues that the mind body distinction is purely for the convenience of our thought processes and has no basis in reality. When an indi- vidual is suffering from a shock, long-term overwork, physi- cal trauma etc the disturbance to their whole being may be expressed through the areas we know as mind, body and Improving relationships with friends and fam-ily and enable you to do things together Some people tend to express things through their body and may be physically ill whereas others do not show much dis- Controlling your weight and feeling better turbance in their physical being, but instead manifest the difficulty in mental processes such as loss of concentration, thought disorders, memory loss or emotional issues such as The NHS studies have found that poor outcomes may occur depression and anxiety. While the disturbance may be most with sufferers who belong to a self help group, are in receipt clearly seen in one area, it is just as likely that the whole of sickness benefits and who want to feel well. This would suggest that ME is viewed as a mind issue. The wide range of symptoms in ME support this view, along The ME community is very concerned that GET is a recom- with the fact that different sufferers report concern in differ- mended treatment. Wearden et al, April 2006, detail that ent areas. This is why the physical problems of ME/ CFS, the reports of GET as to being useful could not be applied to just like cancer or back pain, may be greatly helped by psy- the ME sufferers and that it was unacceptable to patients. chological interventions such as counselling or psychother-apy. Cheney, P documents the injury to the aerobic system in ME sufferers and explains why excessive training and aerobic I n addition if a patient suffers major physical difficulties this exercise can dramatically worsen the condition of ME pa- in itself is likely to impact on mental and emotional function- tients, explaining the mitochondrial abnormalities in skeletal ing. We also know that many sufferers have a change in lifestyle, loss of income as well as coping with frustrations through how they are treated by some clinicians, employees GET is not accepted by the British Formulary in ME and etc and being forced to live life in a slower lane. therefore should not be considered to be within the legal framework for treatment. People with ME/ CFS understandably resent the notion that they are malingering or imagining their symptoms when Kennedy et al (2005) have shown that exercise in patients there is an evidential research base that this is not the case with ME produces raised levels of isoprostanes which are This may lead sufferers to reject therapies which are de- Managing Activity/ Symptoms
signed to approach a problem from a psychological angle such as counselling and psychotherapy. To use such therapies is not to deny the physical basis of the illness, but to understand that mind/ body/ feelings actu- ally are all part of one system, and that suffering can be best alleviated by support from all directions. Stretch DVDs, Strength and conditioning, The key talking therapies are counselling and psychother- apy. Distinguishing between the two is not straightforward and there is considerable disagreement about the defini- tions. However, in general, counselling tends to be shorter- term and focussed on specific, clear, issues, while psycho- Yellow sunglasses/yellow file pockets and therapy is often longer-term and works with more long- standing, deep-seated issues which may be harder to define. Graded Exercise Therapy
One of the favoured approaches by clinicians is GET. This is graded exercise therapy. I t is a sleek management approach based on the setting of goals from a base of physical activity following an assessment of the patient. I t was identified by the CFS/ ME working group as a beneficial therapeutic strat- egy. GET is the favoured treatment detailed in the NHS guidance and the NI CE consultation document. The aim is for the sufferer to do more aerobic exercise in order to re- Lightning therapy, Cognitive behavioural therapy, Hooper confirms the majority of ME/ CFS patients are dissat- Identification of environment aggravators and isfied with GET and reports that it is frequently harmful. Yet for some patients it is beneficial. The benefits of GET are suggested to include: Improving physical strength. Improving physical fitness. 25% ME Group
Helping you to do more activity in your day.

Source: http://www.me-portal.co.uk/booklet17.pdf