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Frequently asked questions

What causes CFS?

The cause of the condition is as yet unknown, but research has shown that the onset of CFS is usually associated with a viral illness (such as glandular fever), significant life stresses or emotional events and other illness or a combination of them all. 

What we do know is that it is a condition consisting of various symptoms, the main one being persistent fatigue and excessive tiredness or fatigue, made worse by activity and not alleviated by sleep or rest. 

Are my symptoms all in my head?

No. CFS symptoms are real physical symptoms; in some cases it might not be clear why the symptoms have continued for so long but that does not mean it is 'all in the mind'. CFS symptoms may be exacerbated by unhelpful patterns of boom-bust activity or by stress; we do know that the symptoms associated with CFS present a complex interaction of physical, psychological, social and emotional factors and a greater understanding of such factors and how they work to maintain the difficulties is helpful for recovery. 

Should I take antidepressants?

It is advisable to discuss your individual situation regarding medication with your doctor. In general though, some anti-depressants have been found to be helpful in cases of CFS e.g. Amitriptyline for regulating sleep and reducing pain. However, there is little evidence that other anti-depressants, e.g. Prozac, are helpful in cases of CFS unless there is also a diagnosis of depression.

Is exercise bad for me?

You may be worried that any increase in exercise or physical activity could make your condition worse. Be reassured - research has shown that a guided, gradual exercise programme can help people who suffer from CFS without causing ill effects. It works by helping you to gradually adapt to physical activities that you have been unable to do since becoming unwell. Graded Exercise Therapy's starting point is your own current level of ability and helps you to work towards your own physical goals and objectives. 

If you undertake a sudden and noticeable increase in your activity or exercise levels this will likely result in a temporary increase in symptoms or a setback. Whilst distressing, it does not mean that you have damaged yourself or harmed your muscles and can be managed like other setbacks. Exercise and activity should be increased in a gradual manner and discussed with your therapist.

How long before I get better?

It is difficult to predict recovery in CFS and there is enormous variation even in people with similar degrees of CFS severity. Recovery from CFS means different things for different people; Essex CFS Service is a rehabilitation and recovery service and therefore we work with patients to help them achieve a good quality of life, even if they do not make a full recovery to their pre-illness levels of activity.

Should I have the flu jab?

There is no definitive answer or official guidance; some people with CFS do suffer a setback following the flu jab, but this is unlikely to be as severe as getting flu. For this reason many CFS sufferers choose to have the injection, but it is ultimately down to individual choice. You may wish to discuss this further with your GP.

Should I follow a particular diet or take supplements?

The recommendations for CFS from the British Dietetic Association are to follow a healthy balanced diet - details of which can be found on their website www.bda.uk.com.

It may also be helpful to eat regular small meals and snacks which include slow release carbohydrates eg cereal bars, wholewheat bread and rice, beans, fruits and vegetables, to help your energy levels. There is no scientific evidence that a specific diet improves CFS - if you require more advice it is advisable to discuss with your GP who can refer you to a dietician if appropriate.

There is a need for further research regarding supplements. The current advice is that if you are concerned about nutritional intake, keep to a multivitamin and mineral supplement with no more than 100% recommended daily amount (RDA). If you spend limited time outside it is recommended to take a Vitamin D supplement at 100% RDA.

Why do I feel better when I go on holiday?

Often, for patients with CFS, when they go on holiday the increased relaxation and being away from daily stressors has a beneficial influence on their CFS symptoms. However, a holiday can also increase stress levels and have a negative impact on symptoms due to the disruption to routine as well as the journey and the preparation required. Being prepared for the latter, taking pre-emptive rest and breaking up the journey can encourage a more enjoyable holiday.

What benefits am I entitled to?

It is not within the remit of the Essex CFS Service to advise on benefits; however it is recommended that if you have questions or need advice to either contact your local jobcentre where they will have a disability advisor, the Citizens Advice Bureau or alternatively you can access the Government website www.gov.uk for information.

Do I need to inform the DVLA?

The DVLA indicates that anyone who has been given a new medical diagnosis since obtaining their driving license is obliged to inform them. 

Do I have to disclose my CFS diagnosis on an employment application form?

You are under no obligation to disclose your diagnosis of CFS. However there may be occasions where an application form requests specific medical information. It is worth noting that if you do not disclose CFS to an employer you do not come under the cover of the Equality Act 2010 and therefore would be unable to seek 'reasonable adjustment' in your workplace.

Is it safe to get pregnant if I have CFS?

Yes it is safe to get pregnant with CFS. It is thought that about one third of women experience fewer CFS symptoms during pregnancy, one third stay about the same and the remaining third experience increased symptoms.

How long/frequently will I require treatment?

Treatment sessions last up to one hour consulting and may be weekly, fortnightly, monthly or further apart.

What is expected of me?

We expect you to commit to a period of rehabilitation as guided by your therapist. We do not recommend more than one therapeutic treatment at a time in order to facilitate commitment and to avoid any conflict of interest.

What happens if I am unable to get to a clinic?

It is important for your recovery to attend appointments in person however, if you are unable to get to clinic you will be able to change one of your treatment sessions to a telephone appointment, apart from your initial assessment and first treatment session which must be attended in person.

What happens if I am unable to keep an appointment?

If you do need to change an appointment please contact the administration team on 01702 385247. If possible please try to give us a few days' notice if you are unable to keep an appointment rather than cancelling on the same day as the appointment.

If you do not attend your initial assessment appointment, without contacting the service, you will be discharged back to the care of your GP. We can only offer you two changes of appointment during your treatment programme. This is to ensure that you gain the maximum benefit from your therapy.

If you do not attend a treatment session without first contacting the service, we will assume you no longer require treatment and you will be discharged from the service. Your GP will be informed.