talkhealth forums

I would appreciate any professional views (plus feedback from anyone with a similar personal experience to mine) about never getting hungry and having no real appetite.
I have had ME/CFS since around 1999, diagnosed formally in 2004 and have also been labelled as having IBS. This situation has gone on for many years.
I do eat a healthy as possible diet - as one has to obviously eat - but I can only manage small amounts before feeling full ( that has been the case all my life - and has caused no end of problems as a child -being force fed etc.). My BMI is borderline underweight - but I do keep an eye on that. I am on Ad-cal and take a multvit daily.
Many Thanks.

Hello Young Jenny

Poor appetite and finding it hard to eat enough is common in ME/CFS. It sounds as if this has been a long-term issue, which you are managing pretty well if your weight is stable, albeit a little on the low side. By taking a daily multi-Vit and AdCal you will be topping up any lack of calcium, vitamin D and other necessary multi-vitamins. Do continue to do this as it is sensible given the low amount you are able to eat. Also checking your weight from time to time is useful and any further weight loss may need more diet intervention. For people with small appetite it is best to eat higher fat foods, e.g. full cream milk is better than lower fat, snacks, treats and nourishing drinks in between. You may do better at keeping your weight up by having 6 small meals/snacks a day. If you are concerned do speak to your GP as a referral to a dietitian can help you with a lot more suggestions and tips on how to put on weight. Also, if your appetite and food choice is compromised by you Irritable bowel symptoms, it would be worth seeing a dietitian. There are evidence based approaches which you could explore with your dietitian.

Thank you very much for your advice and time Sue.
Unfortunately I cannot tolerate high fat foods at all e.g. butter, cream, full fat milk etc. and I also forgot to mention what I assume is 'delayed gastric emptying' as it takes hours to digest one small meal - even more so if I have protein. Do you have any ideas on the mechanisms / underlying reasons for my type of diet issues?

Hello Young Jenny
Thank you for getting back to me.
I would recommend you ask your GP to refer you to a dietitian with your issues of delayed gastric emptying and low body weight/difficulty in keeping to a healthy weight. A dietitian will have the medical understanding of this condition and the potential nutritional consequences and solutions, and be able to give you individual advice.
Below are things that can help reduce the symptoms of delayed gastric emptying.
• Food and meals that are easier and quicker to digest can be helpful
• Reducing your meal portions but eating more frequently
• Changing the consistency of your meals to be softer or semi-solid consistency. Porridge, soup are good examples of this consistency.
• Use more fluid calories
• Reducing your fat intake, as foods high in fat take longer to leave your stomach. High fat foods include cheese, chocolate, chips, pastry, pies, fried foods. However fat is a good source of energy and calories, and weight loss can be a problem.
• Reducing your fibre intake, particularly from course raw fruit and vegetables, such as in coleslaw, apple with skin, dried fruit, nuts, and seeds. It is still important to have five portions of fruit and vegetables a day. However, a smoothie drink, puréed fruit, tinned fruit, peeled fruit and cooked vegetables may be better tolerated than fresh fruit and vegetables.
• Chewing your food well. This helps reduce the work of the stomach.
• If possible sit or even get up and walk for sometime after eating, rather than lying down
Finally, there has been a study, (Burnet, 2004), which did show a link with delayed gastric emptying and CFS.

This is the link http://www.ncbi.nlm.nih.gov/pmc/articles/PMC544348/

Thank you very much for all this advice Sue - really appreciated.

Sue Luscombe wrote: Finally, there has been a study, (Burnet, 2004), which did show a link with delayed gastric emptying and CFS.

Hi Sue,

I found this interesting since my child has no appitite only feeling a little hungry in the evening and had lost a lot of weight. Currently she has managed to gain weight taking fortisips and is seeing a diatition.

I've not heard of delayed gastric emptying before and given you say there is a link with CFS I was wondering are there signs to look for to see if this is a problem.

Hello adrian01

Sorry for the delay in posting this reply.

Losing weight and not being able to eat enough is a huge problem in CFS. Children especially can find nausea an issue which all too often leads to low intake, consequently affecting their weight and growth. My experience is that the nausea and poor appetite tend to improve as other CFS symptoms improve.

I am so glad that your child is under the supervision of a dietitian, because there are ways to help treat a poor intake with many products like Fortisip, which you mentioned, which can be prescribed by your GP when appropriate. The important thing is that your child is being monitored and having an individual, tailored nutrition plan. It’s great that your child is now gaining weight and managing a more nourishing intake.

I have now added a link to the Burnet medical publication on ‘Delayed gastric emptying and CFS’ in my post above for others, for general interest. The symptoms described are fullness and bloating after a small meal, abdominal distension, nausea, and loss of appetite. Actually, the most important thing is to ensure the consequences of these types of symptoms are recognized and any resulting poor nutrition is treated.