Changes in weight – which can be upwards or downwards – are often reported by people with ME/CFS and we frequently feature questions on this subject on MEA Facebook for example, which lead to quite popular discussions.
Although there is no research evidence to indicate that the underlying disease process in ME/CFS can affect weight (as it does in conditions like having an overactive or underactive thyroid gland) there are various reasons why people with ME/CFS may find that their weight is increasing or decreasing.
So if you have a noticeable change in weight, this is something that you do need to speak to your GP about – who can check to make sure that this isn't being caused by another health problem.
The ME Association has a new information leaflet covering diet and nutrition which has been written by our two professional advisers on diet and nutrition – Sue Luscombe and Michelle Dobrota Gibbs.
This leaflet is currently being prepared for publication later this month and will cover the management of both weight gain and weight loss in more detail.
Basic information from the ME Association
It is not unusual for weight changes to occur in ME/CFS and you may find that you lose weight in acute phases of the illness, or if your appetite is not so good, you feel sick, or because of the effort of eating.
To prevent weight loss, or to increase your weight, you will need to eat more often, and include healthy snacks and nutritious drinks, such as nuts, milk, or soya, or smoothies.
It is also quite common for people with ME/CFS to gain weight. This can be due to a lower physical activity level, or “comfort eating” when feeling low.
Some people report that they feel much hungrier than normal (medical term = polyphagia). It is not known why this happens, but it may be linked with hormonal changes and poor sleep patterns as well as the above.
Simple strategies for managing weight gain include:
- Try to counteract this by focusing on positive healthy food choices, such as five or more portions of fruit and vegetables a day and healthy carbohydrate foods to aid feeling full.
- Keep higher calorie foods, that have a high fat and/or sugar content (such as biscuits, chocolate, cakes, crisps and sugary drinks) as a treat only.
- Choose drinks that have few calories, such as water, tea, herbal tea, and unsweetened coffee to hydrate.
⇒ You must see your GP if you have a significant and unexplained degree of weight loss or gain – i.e. 5-10% of your body weight in 3-6 months if you are over 18 years, or weight change outside the normal growth curve in the case of a child or adolescent.
There are medical conditions that can cause weight gain (e.g. an under active thyroid gland, polycystic ovary syndrome).
Weight gain is also a fairly common side-effect for some prescription only medications taken by people with ME/CFS (e.g. amitriptyline and gabapentin).
Your GP can consider dosage changes to medications, or alternative treatment options, and check to make sure that there isn’t another medical explanation for your weight loss or gain.
Your GP can also refer you to see a Dietitian and/or a hospital specialist if there are any concerns about the cause of weight loss or weight gain, or you need more help with management.
You can find the MEA quick survey on our website homepage – it's about halfway down the page.
Image copyright: udra / 123RF Stock Photo
I voted as large increase although I had a significant decrease after that. My ME onset was gradual over several years, but my weight increase was towards the end of that period. The weight gain was rapid and unlike anything I had experienced. At this time I was travelling into London daily to work until I became too ill to work. Illness was fluctuating, it felt like it was coming in bursts. The weight gain was not due to inactivity. I gained some further weight after I had to stop work. Then I experienced a rapid weight loss. I associate that loss with the onset of diabetes.
After my blood sugar was under control I started to gain weight again. Then I went on a serious diet to get rid of the weight and to help blood sugar control. It worked in both respects. I took off 30 pounds and improved my blood sugar significantly. Over the years some, but no where near all, of the weight has slowly crept back on. I am still more than 2 stone below my peak weight. I occasionally do short diets to take off a few pounds as the tendency to gain is still there.
If you looked at a graph you would say that my weight fluctuates. However I know that the periods of weight loss are due to either a second health issue or to my deliberate efforts to get weight off. I associate a rapid weight gain and the tendency to put back what I have taken off with ME. I am sure that the effect of my ME on my weight is one way.
I’m glad that you’re getting these numbers. However, Dr Carruthers (of the CCC and ME ICC), and 2 other specialists, told me that weight change is a common part of ME. I was very fit pre-onset, and have always had an extremely healthy diet. I gained 100 pounds in the first year and it stayed at that level until 15 years later when a few botched operations had me in hospital for a few months, where I gained another 40 lb. I ate none of their desserts, bread or margarine. Made them give me salads with oil/vinegar dressing, etc. So I think you need to amend your section on the reasons people gain weight to include that it can come with ME, nothing to do with poor eating habits.