Posted by: "Dr. Marc-Alexander Fluks" Sent: Saturday 13 January 2018 10:46 To: LOCALME <firstname.lastname@example.org>; MEACTIONUK <email@example.com>; MECHAT-L <firstname.lastname@example.org>; Colin Barton <email@example.com> Subject: Alastair Miller: The prognosis of CFS/ME The prognosis of CFS/ME ----------------------- Alastair Miller Despite a huge investment in biomedical research in the field of CFS/ME, there is still no unifying mechanism that explains the development and persistence of the syndrome. Neither is there a simple laboratory test that can confirm nor exclude the diagnosis. The diagnosis remains a clinical one made by an experienced clinician and based on a very characteristic pattern of symptoms. Although every patient's experience may differ, the overall constellation of features makes the diagnosis clear so it is a positive diagnosis rather than a 'diagnosis of exclusion' (although it is usual to perform a number of simple laboratory investigations to ensure that no alternative or additional diagnosis exists). Once the diagnosis has been established there are two questions on everyone's mind. What is the treatment and what is the prognosis (outlook)? I have not been asked to review the treatment here and it remains controversial but suffice it to say that in line with the lack of a disease mechanism there is similarly, a total absence of pharmacological approaches to treatment. So although some drugs may be helpful in relieving specific symptoms, there is no drug that will affect the overall natural history of the condition and effect a 'cure'. Although NICE guidelines and the PACE trial remain contentious amongst some patient groups there is absolutely no doubt in my mind that the current approaches of cognitive behavior therapy (CBT) and Graded Exercise Therapy have helped and continue to help a large number of people to recover from the condition. This is based on my own personal experience, trial evidence (PACE and others), anecdotal experience from colleagues and patients and data from the National Outcomes Database (NOD). Many of the websites give (in my view) an unrealistically gloomy picture of the outcome for CFS/ME. It is likely that those who still suffer from the condition may contribute more vociferously to the websites whereas those who have recovered may prefer to move on. Apart from the NOD there is little scientific data on which to prognosticate so my views are based largely on anecdotal experience gathered over a 30 year career of involvement with this condition. However, they are largely in accord with the NOD data. In my view the simplest way to think about prognosis is in 'thirds'. Using best available therapy (CBT/GET delivered by trained and experienced therapists), approximately a third of patients will make a full recovery and return to their pre morbid activity, about a third will improve but not recover fully and about a third will stay the same (and a small number may deteriorate). There are various markers of a good prognosis: * Having a relatively acute onset with a specific pre-disposing illness * Not having any ongoing specific aggravating factors such as disputes at work, relationship issues, litigation etc * Having an open mind about the causes and disease mechanisms * Early engagement with a good therapist Conversely, the markers of a poor prognosis are * Having a slow onset over a number of months with no obvious precipitating illness * Having ongoing perpetuating factors (as above) * Constantly looking for an alternative biomedical explanation for symptoms * Using alternative, unproved and often expensive approaches to therapy. In summary although the prognosis overall is variable and for those with severe longstanding symptoms and quality of life is severely impaired, overall the majority of sufferers will improve with time. Hopefully in future we shall have therapies that can improve this prognosis further. -------- Alastair Miller is now retired from CFS/ME practice but spent 10 years as Clinical Lead for CFS/ME at the Liverpool Infectious Disease Unit. He reviewed adverse events for the PACE trial and was on the Trial Steering Committee for the GETSET trial. He was Chair of the British Association for Chronic Fatigue and ME (BACME) for 3 years and Principal Medical Adviser to Action for ME (AfME).