charles shepherd
Senior Member
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Daily Express doctor covers ME/CFS (22/8/2017)
Q "SOMEONE I know has ME. She is very young and seems to be gaining weight very quickly. What is ME and how it can be treated?"
A "MYALGIC encephalomyeltis (ME) is also often referred to as Chronic Fatigue Syndrome.
It is a long-term illness with numerous symptoms, although the most common one is extreme tiredness and feeling generally unwell.
Others can include muscle or joint pain, headaches, sleep problems, feeling dizzy, nauseous and problems with concentrating or memory.
Weight gain is not a symptom of ME but a sedentary lifestyle and eating too much of the wrong foods can lead to the pounds piling on.
ME can affect anyone of any age, including children but it seems to be more common in women between their mid 20s and mid 40s.
The cause of ME is not known but it has been suggested that it may be triggered by a viral infection and certain factors, such as mental health conditions including depression.
An underlying abnormality with the immune system may make someone more at risk of developing the condition.
There isn’t a specific test for ME, so it is usually diagnosed by a specialist after other conditions have been excluded.
Treatment aims to reduce the symptoms and, depending on the illness, may include talking therapies, such as cognitive behaviour therapy, a programme of gradual increase in activity and medication to help control pain or improve mood.
Most people with ME do usually get better over time."
MEA response:
Dear Dr Leonard
Your Q and A item in the Daily Express today about ME/CFS has provoked a lot of interest and some valid criticisms on the MEA Facebook page:
https://www.facebook.com/meassociation/
To quickly summarise:
1 The cardinal diagnostic features of ME/CFS are exercise-induced muscle fatigue and post-exertional malaise/symptom exacerbation
2 As with any long term disabling condition, some people with ME/CFS will go on to develop clinical depression at some point. However, depression, or other mental health problems, are not a recognised trigger factor for ME/CFS
3 We are regularly dealing with queries about both weight loss and weight gain in ME/CFS and have a dietitian who has written about the management of weight change in some detail in our information leaflet covering diet and nutrition. Where weight gain is occurring, other medical conditions with overlapping symptoms (eg hypothyroidism and polycystic ovary syndrome) should be considered - as should the fact that a number of drugs that are commonly prescribed in this illness (eg amitriptyline and gabapentin for pain relief) can cause weight gain as a side-effect
4 The information on prognosis is incorrect. While a significant proportion of people with ME/CFS do steadily improve to some degree, and a much smaller number return to full or near normal health (especially children and adolescents), this is a long term and often very disabling illness for many people. I would suggest having a look at the Prognosis section (1.4.3) in the CMO Report on ME/CFS. This report can be accessed using the document archive section in the MEA website:
http://www.meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf
5 We collect a lot of patient evidence on which treatments help and which do not. The majority of patients report that CBT is often of no value, graded exercise therapy (GET) makes their condition worse, and that the most helpful approach is Pacing
MEA report on CBT, GET and Pacing:
http://www.meassociation.org.uk/how-you-can-help/introduction-to-our-cbt-get-and-pacing-report/
The MEA has an extensive range of literature on all aspects of management:
http://www.meassociation.org.uk/wp-content/uploads/MEA-Order-Form-Autumn-2017.pdf
And we can supply you with a copy of our 'Purple Book' guidelines on research, clinical assessment and management for health professionals if you would like a copy
http://www.meassociation.org.uk/201...earch-masterwork-now-available-19-april-2017/
If I can be of any further help please let me know
Regards
Dr Charles Shepherd
Hon Medical Adviser, MEA
Member of the CMO Working Group on ME/CFS
Q "SOMEONE I know has ME. She is very young and seems to be gaining weight very quickly. What is ME and how it can be treated?"
A "MYALGIC encephalomyeltis (ME) is also often referred to as Chronic Fatigue Syndrome.
It is a long-term illness with numerous symptoms, although the most common one is extreme tiredness and feeling generally unwell.
Others can include muscle or joint pain, headaches, sleep problems, feeling dizzy, nauseous and problems with concentrating or memory.
Weight gain is not a symptom of ME but a sedentary lifestyle and eating too much of the wrong foods can lead to the pounds piling on.
ME can affect anyone of any age, including children but it seems to be more common in women between their mid 20s and mid 40s.
The cause of ME is not known but it has been suggested that it may be triggered by a viral infection and certain factors, such as mental health conditions including depression.
An underlying abnormality with the immune system may make someone more at risk of developing the condition.
There isn’t a specific test for ME, so it is usually diagnosed by a specialist after other conditions have been excluded.
Treatment aims to reduce the symptoms and, depending on the illness, may include talking therapies, such as cognitive behaviour therapy, a programme of gradual increase in activity and medication to help control pain or improve mood.
Most people with ME do usually get better over time."
MEA response:
Dear Dr Leonard
Your Q and A item in the Daily Express today about ME/CFS has provoked a lot of interest and some valid criticisms on the MEA Facebook page:
https://www.facebook.com/meassociation/
To quickly summarise:
1 The cardinal diagnostic features of ME/CFS are exercise-induced muscle fatigue and post-exertional malaise/symptom exacerbation
2 As with any long term disabling condition, some people with ME/CFS will go on to develop clinical depression at some point. However, depression, or other mental health problems, are not a recognised trigger factor for ME/CFS
3 We are regularly dealing with queries about both weight loss and weight gain in ME/CFS and have a dietitian who has written about the management of weight change in some detail in our information leaflet covering diet and nutrition. Where weight gain is occurring, other medical conditions with overlapping symptoms (eg hypothyroidism and polycystic ovary syndrome) should be considered - as should the fact that a number of drugs that are commonly prescribed in this illness (eg amitriptyline and gabapentin for pain relief) can cause weight gain as a side-effect
4 The information on prognosis is incorrect. While a significant proportion of people with ME/CFS do steadily improve to some degree, and a much smaller number return to full or near normal health (especially children and adolescents), this is a long term and often very disabling illness for many people. I would suggest having a look at the Prognosis section (1.4.3) in the CMO Report on ME/CFS. This report can be accessed using the document archive section in the MEA website:
http://www.meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf
5 We collect a lot of patient evidence on which treatments help and which do not. The majority of patients report that CBT is often of no value, graded exercise therapy (GET) makes their condition worse, and that the most helpful approach is Pacing
MEA report on CBT, GET and Pacing:
http://www.meassociation.org.uk/how-you-can-help/introduction-to-our-cbt-get-and-pacing-report/
The MEA has an extensive range of literature on all aspects of management:
http://www.meassociation.org.uk/wp-content/uploads/MEA-Order-Form-Autumn-2017.pdf
And we can supply you with a copy of our 'Purple Book' guidelines on research, clinical assessment and management for health professionals if you would like a copy
http://www.meassociation.org.uk/201...earch-masterwork-now-available-19-april-2017/
If I can be of any further help please let me know
Regards
Dr Charles Shepherd
Hon Medical Adviser, MEA
Member of the CMO Working Group on ME/CFS