Frequently Asked Questions
1. How common is CFS/ME?
CFS/ME is a chronic disabling disorder affecting around 250,000 people in the UK including up to 30,000 children. As such, it is one of the leading causes of time off work, school or college, significantly disrupting lives, sometimes permanently.
2. How long does the disorder last?
The symptoms can last for several years, with a characteristic pattern of fluctuation that involves a sequence of good and bad days, weeks and sometimes months. Indeed, once therapy has started, recovery normally takes at least as long as the patient has been ill. The duration of recovery also depends on how consistently the patient is able to follow the treatment protocol.
3. Is CFS/ME primarily a psychological disorder?
No. There is substantial evidence that CFS/ME is a neurological illness, a disorder of the brain. One clear pointer is the fact that extreme alcohol intolerance is common, present in three out of four of cases.
Alongside alcohol intolerance, people with CFS/ME frequently have an intolerance to certain foods including wheat and dairy as well as an extreme sensitivity to chemicals such as perfume, car emissions and some medications including some antidepressants.
4. Does the Getting Better Regime protocol differ from the NICE guidelines?
The differences are subtle but significant. Here are the three main ones:
i. Both the NICE guidelines and the Getting Better Regime propose a slow, paced return to normal activity. However, the Getting Better Regime’s MAP (Modified Activity Programme) makes it clear that maximal exertion should never be part of the solution to CFS/ME.
Instead, getting better, in the initial stages and until a refreshing sleep pattern is restored, is always all about doing less than you are capable of doing. With GET (Graduated Exercise Therapy) recommended by NICE, however, there is a widespread view that it encourages an inflexible increase in physical activity that can worsen the disorder in a high percentage of patients.
ii. The Getting Better Regime proposes a combination of two medications as being essential to recovery: a tricyclic antidepressant such as amitriptyline to encourage refreshing sleep along with an SSRI (selective serotonin reuptake inhibitor) to boost energy levels. This combination is not recommended by NICE.
iii. The Getting Better Regime recommends that CBT (Cognitive Behavioural Therapy) should be tailored to the patient’s individual needs and symptoms and offered on a one to one basis. When used to treat depression, it should be made crystal clear that the depression is the result of or an association with CFS/ME and not the cause.
5. How can I avoid the boom/bust cycle?
The Getting Better Regime is specifically designed to avoid the boom/bust cycle that is caused by ‘overdrawing’ on reserves during ‘good’ days when patients feel full of energy. Such behaviour leads to cumulative fatigue resulting in the short-term in more ‘bad’ days with an increase in the severity symptoms – as well adding extra days to the length of the illness.
6. Do I have to stop using my computer and watching TV in order to recover from CFS/ME?
Yes. Activities that are visually demanding as well as requiring mental effort such as watching TV, surfing the Internet or texting messages on your mobile are at least as exhausting as physical activities – and time spent doing them should be restricted. Computer games that involve noise, music, fast moving visual images and bilateral hand dexterity are among the most exhausting activity: draining energy at least four times more quickly than if just one of these factors is involved.
7. I’ve heard that Prozac and other SSRIs cause unpleasant side effects. Why does the Regime recommend them?
It’s true at least one trial has shown that SSRIs can cause particularly unpleasant side effects in people with CFS/ME. However, these types of drugs are used to boost energy in sufferers – and do a very good job of doing this. What’s more, the problem of side effects can be avoided entirely by starting the drug on a very low dose – and only increasing it gradually over several weeks. If the particular type of SSRI still causes side effects, it’s probably worth trying another brand which you may find much easier to take.
8. Can I take an SSRI drug at the same time as taking a tricyclic drug such as amitriptyline?
Yes, provided your doctor arranges for you to have regular blood tests to ensure that you are not suffering an adverse interaction between these two drugs. No adverse interactions have ever been found.
9. Do I have to stick to the Getting Better protocol for the rest of my life?
No. Once you are recovered, you will be able to resume your normal life – though you are likely to be more aware of what is bad for you and thus be able to avoid damaging activities and behaviour. However, you should be able to engage in normal activities including vigorous exercise, watching TV and playing computer games as well as returning to school, college or work.
Some people who have been ill for a very long time may not quite reach their previous level of functioning but achieve an acceptable level. However, the return to normal life is best achieved slowly. Your doctor should be willing to provide support and indeed ‘a doctor’s note’ to help you through this period.
10. How do I get to see Dr Smith?
Nearing retirement, Dr Smith currently holds NHS contracts with only South Suffolk and Thurrock NHS Trusts. However, he is now happy to see patients outside the NHS in return for a donation to the Get Well Club, which will be put towards the website Upkeep. In each case, a GP’s referral will be required.
Online support from the Get Well Club is available and telephone support is available to Get Well Club members only.
CFS AND ITS SUBGROUPS
For a more detailed background on Dr Smith and his medical theories behind his treatment plan, the PDF Understanding and Diagnosing ME/CFS (123 pages 737KB) can be downloaded here.
We regret we cannot provide hard copies
This document outlines how the successful treatment plan was developed and how and why it works. Primarily for those in the medical profession it will be of interest to patients and their supporters.
Dr Smith can be contacted at Email firstname.lastname@example.org
DonationsTo help with the running expenses of this website please contribute something however small.
You can either donate via an online transfer using the Get Well Club bank details below, or if you prefer to donate by cheque please make it payable to "Dr D G Smith" and pay it into your nearest branch of the Halifax, using the bank details below on the paying in slip.
Halifax Bank Account Details
ACC: 258 466 65
SORT: 11 - 67 – 22
To date, £1000 has been sent to the ME Association.