The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Polyphagia (excessive hunger/appetite) and ME/CFS

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Apr 6, 2017.

  1. charles shepherd

    charles shepherd Senior Member

    Polyphagia (excessive hunger/appetite) and ME/CFS

    We are currently having a discussion on MEA Facebook on the subject of polyphagia - excessive/constant hunger

    It follows on from a question from one of our members

    Further input on the PR forum would be welcome from anyone with personal experience of this rather unusual problem

    MEA Facebook question and CS reply:


    xxxxx writes:

    Does anyone else struggle with being constantly hungry? (Especially those in the severe category).

    I know that boredom etc can make you want to eat but since relapsing and entering the severe category, some months ago, I seem to have a never ending hunger.

    Even after big meals I am still hungry. I try to eat really filling foods and not have big gaps between eating but to no avail.

    Sometimes I actually get stomach pains from being so hungry.

    I am a vegan and I try hard to be healthy.

    I have only experienced this my decline in condition.

    Is it due to not being able to absorb energy?



    Firstly, for the benefit of everyone here on MEAF, I ought to point out that increased hunger (medical term = polyphagia), or constantly feeling hungry, is NOT a symptom of ME/CFS.

    Secondly, there are a number of important medical conditions (diabetes in particular) that can cause increased hunger. So this is something that you do need to mention to your GP - who can, if necessary, do some blood tests - including your blood sugar level.

    I have inserted some more detailed information on possible causes of polyphagia from Diabetes UK below.

    Thirdly, I wonder if this might be related to your vegan diet and the overall nutritional content .

    So I think it would also be helpful to discuss this with a dietitian (your GP could refer you to one on the NHS) who has some knowledge of vegan diets .

    I will also pass this query to Sue Luscombe, our professional adviser at the MEA on diet and nutrition, for her opinion and will post this later when I have her reply.

    More detailed information on polyphagia from Diabetes UK

    Polyphagia = Increased Appetite
    Polyphagia is also known as hyperphagia

    Polyphagia is the medical term used to describe excessive hunger or increased appetite and is one of the 3 main signs of diabetes.

    An increase in hunger is usually a response to normal things such as intensive exercise or other strenuous activity, but polyphagia can also be the result of more severe issues such as depression or stress.

    Also known as hyperphagia, it is one of the three main symptoms of diabetes, along with:

    Polydipsia (increased thirst) and
    Polyuria (frequent, excessive urination)
    Causes of polyphagia

    Polyphagia can also be caused by:

    Diabetes mellitus
    Hypoglycemia (low blood sugar levels)
    Hyperglycemia (high blood sugar levels)
    Binge eating disorder
    Hyperthyroidism (raised level of thyroid hormone)
    Premenstrual syndrome
    Certain prescription drugs such as corticosteroids
    Some psychiatric conditions
    Rare medical conditions such as Kleine-Levin Syndrome and Prader-Willi Syndrome

    Hunger and hyperglycemia

    In uncontrolled diabetes where blood glucose levels remain abnormally high (hyperglycemia), glucose from the blood cannot enter the cells - due to either a lack of insulin or insulin resistance - so the body can’t convert the food you eat into energy.

    This lack of energy causes an increase in hunger.

    Simply eating will not get rid of the hungry feeling of polyphagia in people with uncontrolled diabetes, as this will just add to the already high blood glucose levels. The best way to lower blood glucose levels is to exercise as this can help to stimulate insulin production and reduce blood sugar levels.

    However, if the hunger persists, you may need to consult your doctor or diabetes health care team.

    Hunger and hypoglycemia

    Increased appetite can also be caused by abnormally low blood glucose (hypoglycemia).

    If blood glucose readings fall below 4 mmol/l, the body usually responds by releasing stored glucose from the liver to raise glucose levels back to normal.

    However, people with diabetes that take medication such as insulin and sulfonylureas are at risk of developing a severe form of hypoglycemia and should therefore treat low blood glucose levels by eating something sweet as soon as hypoglycemia is recognised.

    Recognising the symptoms of polyphagia
    The main sign of polyphagia is excessive hunger that doesn’t go away by simply eating more food or eating more regularly than normal.

    If you are worried by your sudden increase in appetite, you should consult your doctor.

    They will examine you to check whether your hunger is a symptom of diabetes or another medical condition.

    MEA Facebook link:

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
  2. Invisible Woman

    Invisible Woman Senior Member

    I go through phases of this. For me there is a definite correlation with the menstrual cycle, I find I'm starving and carb craving the day before and day one of the cycle.

    However, I also find that when I am starting to crash (even if it's just a relatively minor dip) it will also occur.

    I find the best way for me to manage it is:
    - avoid sugar and refined carbs as much as possible
    - make sure I get enough protein and fat
    - eat small amounts regularly and always have an appropriate snack ready
    - avoid caffeine - most of us have to anyway
    - pacing myself as best I can also seems to help this

    No magic wand I'm afraid.

    Edited to add: I should have said that I have a problem with sugar/candida that was only diagnosed after I developed ME but which most certainly predates ME.
    Last edited: Apr 6, 2017
    arewenearlythereyet likes this.
  3. Joh

    Joh Inactivist

    The Canadian Consensus Criteria list "abnormal appetite" as a possible symptom (page 2): Overview.pdf

    ETA: Can definitely relate to the person who asked this question. I've developed an absurd appetite/hunger since I'm mostly bed-bound.
    Last edited: Apr 6, 2017
    Lolinda and adambeyoncelowe like this.
  4. charles shepherd

    charles shepherd Senior Member

    I would accept that it can sometimes occur in people with ME/CFS - as can a huge number of other symptoms

    But I would not agree that excessive hunger is a characteristic or diagnostic feature of ME/CFS

    So if it occurs, exclusion of other medical causes of excess hunger (type 2 diabetes in particular) must be excluded

  5. Dechi

    Dechi Senior Member

    I am having this problem at the moment. The first 1 1/2 years of being housebound, I managed to keep my eating under control. Now I seem to be starving all the time, even after a good meal. I crave sweets and not so nutritious foods, mostly.

    I attribute it to boredom and stress, eating refined sugar which can make you crave even more, and enlarging my stomach because I eat too much ! If there is something I am missing and that can be fixed, I'll be glad to know...
    Last edited: Apr 6, 2017
  6. NelliePledge

    NelliePledge plodder

    thanks for starting this thread Dr S

    Im one of the people who got ME/CFS in middle age and I was already overweight. Since getting ME/CFS
    Ive put on weight struggling to manage quantity of food i eat. I seem to swing between the idea of eating food making me feel nauseous in the morning then in an evening I eat a lot - which is a vicious cycle. Ive also noticed that I have a couple of other symptoms that could be diabetes/pre-diabetes so Ive booked an appointment to see my GP to get checked out. Im also trying to cut out sugar completely and reduce other carbs.
    MEMum and Invisible Woman like this.
  7. Diwi9

    Diwi9 Senior Member

    Polyphagia is definitely a symptom for me. In the mornings, I don't have much appetite, but in the evenings I am quite hungry, even if I'm physically full. I've learned to just stop listening to what my body is signaling if I've eaten. Sometimes I will drink a warm mug of broth to settle the craving feeling. Would love a medication that treated this...any ideas?
    Dechi likes this.
  8. charles shepherd

    charles shepherd Senior Member

    I think most people are aware of the fact that diabetes often causes increased thirst and increased frequency of urination

    But it's not generally recognised, even by some doctors, that increased hunger is also an important waring sign of diabetes

    The three big signs/symptoms of diabetes:

    Mel9, Invisible Woman and Webdog like this.
  9. Webdog

    Webdog Senior Member

    The only time I've ever experienced polyphagia was when I was prescribed Klonopin. Gained 15 pounds (7kg) in 3 weeks.

    I remember having difficulty convincing my psychiatrist what was happening. I don't think she ever fully believed me, and only reluctantly agreed to discontinue the Klonopin.

    My appetite quickly returned to normal after discontinuing Klonopin, but it took a year to get that weight off.
    MEMum and Invisible Woman like this.
  10. charles shepherd

    charles shepherd Senior Member

    Comprehensive list of drugs that can cause polyphagia/increased appetite/hunger:

    Tricyclic antidepressants (imipramine, amitriptyline, and doxepin) cause carbohydrate craving and increased appetite. First-generation antihistamines, most antipsychotics and systemic corticosteroids also may cause increased appetite.

    There is evidence that those drugs, which either antagonize or downregulate serotonin receptors, are more likely to stimulate carbohydrate craving and appetite, and promote weight gain8.

    List of medications with orexigenic effects that cause increased appetite (polyphagia) and excessive food intake:

    Drug Incidence
    Abilify < 1%
    Aceon 0.3% to 1%
    AeroBid 1% to 3%
    Alinia < 1%
    Ambien Rare
    Aricept Infrequent
    Aromasin 3%
    Astelin Infrequent
    Bextra 0.1% to 1.9%
    Carbamazepine (Tegretol®)11
    Caduet < 2%
    Campral 1% to 10%
    Celebrex 0.1% to 1.9%
    Celexa Frequent
    Cinnarizine (®Stugeron)12
    Clomid < 1%
    Clozapine (Clozaril®) < 1%
    Copaxone Infrequent
    Crinone 5%
    Crixivan 2.1%
    Cymbalta 3% to 11%
    Cyproheptadine (Periactin®)5 Increases appetite through antiserotonergic effect on 5-HT2 receptors in the brain6
    Depacon 1% to 5%
    Depakene 1% to 5%
    Depakote 1% to 6%
    Diovan > 0.2%
    Doxil < 1%
    DynaCirc 0.5% to 1%
    Evoxac < 1%
    FazaClo < 1%
    Gabitril 2%
    Gengraf 1% to 3%
    Intron A < 5%
    Kaletra < 2%
    Klonopin Infrequent
    Lamictal Infrequent
    Lexapro Frequent
    Lipitor < 2%
    Lupron < 5%
    Maxalt Rare
    Meridia 8.7%
    Miacalcin < 1%
    Mirtazapine (Remeron®)2 11%
    Namenda Infrequent
    Neoral 1% to 3%
    Nexium < 1%
    Norvasc < 0.1%
    Olanzapine (Zyprexa®)3 upto 14.9% 7
    Oncaspar < 1%
    OxyContin < 1%
    Paxil 3% to 4%
    Permax Infrequent
    Prevacid < 1%
    Prevpac < 1%
    ProSom Infrequent
    Prograf 3% to 15%
    Protonix < 1%
    Provigil > 1%
    Prozac 1% to 10%
    Quetiapine (Seroquel®)4
    Relafen < 1%
    Relpax Rare
    Reyataz < 3%
    Rilutek Infrequent
    Risperdal Infrequent
    Salagen < 1%
    Sonata Infrequent
    Soriatane 1% to 10%
    Spectracef 0.1% to 1%
    Sporanox 2%
    Sular < 1%
    Symbyax 5% to 16%
    Testim < 1%
    Topamax 1%
    Toradol < 1%
    Trimipramine (Stangyl®)10
    Uniretic < 1%
    Vigabatrin (Sabril®)9 1%
    Xanax 7% to 32.7%
    Zoladex 2%
    Zoloft Frequent
    Zomig Infrequent
    Zyban 2%
    Zyrtec < 2%
  11. ryan31337

    ryan31337 Senior Member

    South East, England
    This topic is very relevant to my health. I wonder how many others are also affected, especially when I read many stories of how much better some people are when fasting. Generally my ME/CFS would be categorised as mild, however when what my endocrinologist has assumed to be erratic blood glucose regulation occurs, I have definitely been closer to the moderate category & significantly more disabled.

    In PEM episodes during the mild phases of my illness I would feel increased hunger and some degree of immediate but temporary relief by eating a high carb meal. Equally I would have episodes of excessive thirst & urination, often following exercise (and the subsequent carb loading).

    As my illness slowly relapsed from mild to moderate again it became apparent that the majority of new/worsened symptoms that I was experiencing were actually those matching hyperglycemia & hypoglycemia: thirst, urination, migraine, blurred vision, sleepiness, brain fog, weakness, darkened skin folds, cardiovascular (heart rate & BP swings), sweating and dizziness. I also suffered frequently from chills & insomnia in the early hours.

    Eventually it was realised that the worst of these symptoms (resulting in necessary daytime bed rest/sleeping), were post-prandial. Before getting to this point I had unconsciously upped my food/carb intake by constantly snacking (fruit, biscuits etc.) every hour or two, plus meals directly before bed time. This provided some relief for a while but eventually what was assumed to be episodes of erratic blood glucose still occurred. All of the symptoms above were immediately and vastly improved by adopting a ketogenic diet at the advice of the endo.

    Unfortunately the only testing I had been offered over the years was 9am fasting blood glucose, which always returned normal. Occasional random home measurements were performed and also were within normal ranges.
  12. arewenearlythereyet

    arewenearlythereyet Senior Member

    I've noticed that my hunger in the morning is low but after lunch it ramps up. This seems to be worst when I'm having a bad day (lethargy, poor concentration, high infection symptoms, joint pain etc). Some days are worse than others. I haven't found a more definitive connection though. I've always put it down to "weird metabolism" generally rather than anything specific.

    Cravings are normally for carbs, even though I restrict them in my everyday diet. I count calories every day and do all the sensible things with diet. I guess a part of it could be, you become more tired as the day goes on (well I do anyway) and so your brain thinks it needs food to correct energy deficit?
  13. wonderoushope

    wonderoushope Senior Member

    I have this problem! It goes in phases. I am going through it right now and can last up to a week. Whatever I eat doesn't seem to make much of a dint. It doesn't feel like normal hunger. Today I ate every hour lentils, beans, cabbage, swedes, mince meat and potatoes and hunger would just be there in the background constantly. I also drank 2 cups of water nearly every hour or two. It is really frustrating and stressful, because I find it hard to concentrate with that feeling in my stomach. It finally slowed down in the afternoon, on it's own, but it hasn't gone completely. My craving is for biscuits and chips, but I try to keep them down to a minimum.

    I could eat a huge meal and it wont make much of a dint.

    When this happens, not long after the hunger bout, I tend to get this constant full feeling with only eating like a few tablespoons of something.

    It could possibly be gastritis for me (as I have had it a few times), or a reaction to food groups. I am on an elimination diet, and have just got off testing amine type food. So things like cocoa, slow cooked meat, pork, canned tuna, canned sardines and bananas. Something in that food group could of triggered it perhaps. I had this issue before technically getting CFS. Although, I could of had it and not realised I had CFS or had a mild case of it, that progressed.
    Last edited: Jul 3, 2017
  14. JaimeS

    JaimeS Senior Member

    Silicon Valley, CA
    I experienced that at onset when I was more severe.
    Mel9 likes this.
  15. Kenshin

    Kenshin Senior Member

    I have the opposite symptom, I struggle to put on weight and feel full from a small amount.
    I can relate to craving sweet things though, and still feeling hungry even though you are full... I wonder if it's snacking out of boredom in my case though.
    Last edited: Apr 24, 2018
  16. lnester7

    lnester7 Seven

    I am 100% sure for me is Cfs hunger related. When I crash my appetite is insatiable and ( sexual appetite also increases) the both increase on a crash 100% of the time.
    I decided to give in and I get better energy management when I do follow the cravings but gained like 50 pound so do not recommend.
    Kenshin likes this.
  17. Mel9

    Mel9 Senior Member

    NSW Australia
    I was so hungry, even though I couldn’t exercise at all. The obvious result was weight gain. Lately I have been replacing a meal every day or two with a protein drink (pea based because I cannot tolerate milk protein) and that terrible hunger has gone.
    Plum likes this.
  18. SB_1108

    SB_1108 Senior Member

    Excessive hunger has been a major symptom for me since my onset of ME almost ten years ago. I've asked countless doctors about it but never found any remedy or way to manage it. Mine is pretty extreme. I eat large meals hourly and spend most of my income on food. All energy exertion goes to cooking and doing dishes. Honestly it's one of the most debilating symptoms I endure day to day because my life has to revolve around the constant consumption of food. I can only tolerate about five foods so I'm limited in where I can go. I bring a cooler with me everywhere. I am a bottomless pit and I'm very thin, probably underweight. I try to gain weight by adding elemental diet shakes just to add more calories. Nothing helps.

    I always assumed it had something to do with low short chain fatty acids. I had a stool test result from Genova Diagnostics that said I had very low SCFA levels and I read that SCFA help regulate hunger. Or maybe it could be leptin?

    Regardless it's definitely a symptom of the disease for me.
  19. 1luke2


    Lots of interesting theories here, but a simpler explanation for some (at least in my experience) may just be excess stomach acid, which can be resolved with a course of antacids.

    That's what happens to me -- I'll go through period where I'll feel *extremely* hungry, and eat and eat and eat... and eventually my stomach will be full enough that the symptoms disappear. But when no amount of (sane) eating really resolves it, it eventually dawns on me that it's something like reflux, I start taking strong antacids (or sometimes proton pump inhibitors if I have a prescription), and symptoms calm down & resolve.

    I suspect being stuck lying in bed all day (with stomach acid being concentrated in certain places) might have something to do with it too!
    adambeyoncelowe and Mel9 like this.
  20. Judee

    Judee Senior Member

    I have been trying something new this week that I read about on another website that talks about how to reset our body temperatures. I think a lot of PWC are low-temp and that it is affecting how some things work (or don’t work) in our bodies. (Just a theory that some people have related to thyroid.)

    So anyway, this may not be related to your situation but I've noticed during this experiment that when my temperature starts to fall I get really hungry and this other website says that when we are low-temp our bodies put out a lot of adrenaline to try and get the temp back up or at least to maintain.

    Again, it may not apply to your situation but you could try tracking your temp for a day or so and see if the worst hunger is when it is low or dropping.

    (That being said, this is probably going to sound like a complete contradiction to what I just typed but I also feel ravenous on days when I have a fever. On those days, I feel like I am having a constant hypoglycemic episode that does not resolve even after I have eaten.)

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