Doctor’s Visit Symptom Checklist

Dr. Katrina Berne, a clinical psychologist and author who specializes in ME/CFS & fibromyalgia, has developed a comprehensive symptom checklist she advises her patients to complete and take to their doctors. This form should be updated every few months to document your symptoms and your progress. It’s especially helpful in the disability application process.

Please indicate on a scale of 1 to 10 the severity and frequency of each symptom, with 10 being the most severe and frequent. Use the past two months as a general guide. If you do not have the symptom, leave the space blank. (Thanks to Dr. Berne for providing this list.)


  • Fatigue, worsened by physical exertion or stress
  • Activity level decreased to less than 50% of pre-illness activity level
  • Recurrent flu-like illness
  • Sore throat
  • Hoarseness
  • Tender or swollen lymph nodes (glands), especially in neck & underarms
  • Shortness of breath with little or no exertion
  • Frequent sighing
  • Tremor or trembling
  • Severe nasal allergies (new or worsened)
  • Cough
  • Night sweats
  • Low-grade fevers
  • Feeling cold often
  • Feeling hot often
  • Cold extremities (hands and feet)
  • Low body temperature (below 97.6)
  • Low blood pressure (below 110/70)
  • Heart palpitations
  • Dryness of eyes and/or mouth
  • Increased thirst
  • Symptoms worsened by temperature changes
  • Symptoms worsened by air travel
  • Symptoms worsened by stress


  • Headache
  • Tender points or trigger points
  • Muscle pain
  • Muscle twitching
  • Muscle weakness
  • Severe weakness of an arm or leg
  • Full or partial paralysis of an arm or leg
  • Joint pain
  • TMJ syndrome
  • Chest pain


  • Eye pain
  • Changes in visual acuity (frequent changes in ability to see well)
  • Difficulty with accommodation (switching focus from one thing to another)
  • Blind spots in vision


  • Sensitivities to medications (unable to tolerate a “normal” dosage)
  • Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes,
  • hair sprays)
  • Sensitivities to foods
  • Alcohol intolerance
  • Alteration of taste, smell, and/or hearing


  • Frequent urination
  • Painful urination or bladder pain
  • Prostate pain
  • Impotence
  • Endometriosis
  • Worsening of premenstrual syndrome (PMS)
  • Decreased libido (sex drive)


  • Stomach ache; abdominal cramps
  • Nausea
  • Vomiting
  • Esophageal reflux (heartburn)
  • Frequent diarrhea
  • Frequent constipation
  • Bloating; intestinal gas
  • Decreased appetite
  • Increased appetite
  • Food cravings
  • Weight gain ( _ lbs)
  • Weight loss ( _ lbs)


  • Lightheadedness; feeling”spaced out”
  • Inability to think clearly (“brain fog”)
  • Seizures
  • Seizure-like episodes
  • Syncope (fainting) or blackouts
  • Sensation that you might faint
  • Vertigo or dizziness
  • Numbness or tingling sensations
  • Tinnitus (ringing in one or both ears)
  • Photophobia (sensitivity to light)
  • Noise intolerance


  • Feeling spatially disoriented
  • Dysequilibrium (balance difficulty)
  • Staggering gait (clumsy walking; bumping into things)
  • Dropping things frequently
  • Difficulty judging distances (e.g. when driving; placing objects on surfaces)
  • “Not quite seeing” what you are looking at


  • Hypersomnia (excessive sleeping)
  • Sleep disturbance: unrefreshing or non-restorative sleep
  • Sleep disturbance: difficulty falling asleep
  • Sleep disturbance: difficulty staying asleep (frequent awakenings)
  • Sleep disturbance: vivid or disturbing dreams or nightmares
  • Altered sleep/wake schedule (alertness/energy best late at night)


  • Difficulty with simple calculations (e.g., balancing checkbook)
  • Word-finding difficulty
  • Saying the wrong word
  • Difficulty expressing ideas in words
  • Difficulty moving your mouth to speak
  • Slowed speech
  • Stuttering; stammering
  • Impaired ability to concentrate
  • Easily distracted during a task
  • Difficulty paying attention
  • Difficulty following a conversation when background noise is present
  • Losing your train of thought in the middle of a sentence
  • Difficulty putting tasks or things in proper sequence
  • Losing track in the middle of a task (remembering what to do next)
  • Difficulty with short-term memory
  • Difficulty with long-term memory
  • Forgetting how to do routine things
  • Difficulty understanding what you read
  • Switching left and right
  • Transposition (reversal) of numbers, words and/or letters when you speak
  • Transposition (reversal) of numbers, words and/or letters when you write
  • Difficulty remembering names of objects
  • Difficulty remembering names of people
  • Difficulty recognizing faces
  • Poor judgment
  • Difficulty making decision
  • Difficulty following simple written instructions
  • Difficulty following complicated written instructions
  • Difficulty following simple oral (spoken) instructions
  • Difficulty following complicated oral (spoken) instructions
  • Difficulty integrating information (putting ideas together to form a complete picture or concept)
  • Difficulty following directions while driving
  • Becoming lost in familiar locations when driving
  • Feeling too disoriented to drive


  • Depressed mood
  • Suicidal thoughts
  • Suicide attempt(s)
  • Feeling worthless
  • Frequent crying
  • Feeling helpless and/or hopeless
  • Inability to enjoy previously enjoyed activities
  • Increased appetite
  • Decreased appetite
  • Anxiety or fear with no obvious cause
  • Panic attacks
  • Irritability; overreaction
  • Rage attacks: anger outbursts with little or no cause
  • Abrupt, unpredictable mood swings
  • Phobias (irrational fears)
  • Personality changes


  • Rashes or sores
  • Eczema or psoriasis
  • Aphthous ulcers (canker sores)
  • Hair loss
  • Mitral valve prolapse
  • Cancer
  • Dental problems
  • Periodontal (gum) disease

© copyright 1999 and 2008 by Katrina H. Berne, Ph.D.,



tania selth April 3, 2012 at 7:57 pm

Ive used Katrina Bernes list for years to take to me to doctors with the ones I have highlighted. I keep two copies of her list.. one which has highlighted all the symptoms Ive had with the ME over the 14 years Ive had this and a second list which has any symptom Ive had in past three months highlighted.

This way I (or whoever Im medically seeing) can easily hold the lists side by side and compare how Ive been in the past to how I have been recently

Kate June 7, 2015 at 4:50 pm

This is a great idea.

I am a Physical Therapist who specialized in the evaluation, and treatment of persons with chronic illness, injury and fatigue. I am ironically, now terribly disabled by ME/CFS myself.

This would be better if it were put onto an excel spreadsheet, as follows:

Title the Document, something like, “Comprehensive ME/CFS Symptom Flowsheet/Checklist.”
Make a Place for Name:________________
Date or Approximate Date of Onset:________________
Optional idea… For the Period of _(mo/day/yr, day of the week)___ to _______________
or the Week of:______________

Across the top margin, would be space for the dates. I always find it handy to make two boxes stacked one on the other. Label the first row with Day of the Week, in which you mark with one of the following M, T, W, Th, Fr, Sat, Sun. Then then next row is for the date using a square shaped field with a slash. so an entry would look like 5/3.

The symptoms are listed, broken by a category name and row that is in some color like light green, down the left margin. Make a Last Category that is labeled. “Custom Symptoms.” Leave 5 or 6 blank lines for writing in some of your own symptoms using your own descriptive words like, “Cement Block Brain,” or “Bog Brain.” , “Cant Keep Eyelids Open.” “ZERO Day.” whatever. If you have some particular ones that you experience regularly and need to track them, then type them in. Always leave at least two blank symptom fields.

Down the Right margin, you could create a row that is 2 to 3 ” (min) long. It could be labeled notes. You could even make this space two or three fields = 1 of the symptom rating boxes. Good notes could be done using your own short hand in order to report more info in smaller space. Many of these symptoms occur on an intermittent basis, for example. I may get slurred speech on only a few days of the reporting period covered by the flow sheet (you will have room for about two weeks, per page or 20 days…) , and when I do, it is usually only for a period of time, or starts at a certain time of day. say 3pm….so write 5/3 3pm-5pm. Or a note might be what activity brought on the symptom. Remember that these lines will only pertain to each symptom.

It just occurred to me, that if a person wanted to really kick butt with this list, they could make an excel spreadsheet, with certain functions/directions associated with the fields.
Then make an extra page or two that list your usual activities. Then, if you filled out the fields on some periodic basis, daily to 3x/week, then you could actually create average scores/day or even create all kinds of graphs that would tell yourself and doctor, how you are doing and what youre able to do even in a simple one or two pages of graphs. your life in meaningful pictures!

what if you could have your flowsheet customized only to your groups of symptoms and custom symptoms plus a list of your activities rated by intensity or total minutes per day. Then with a click of a button the flow sheet would turn into a mixed graph that correlated your activities with your symptoms or symptoms severity per day. You could see trends and modify/problem solve. See trends whether you are stable or beginning to recover finally from a relapse…before you could otherwise know.

Wendy Borowski December 31, 2012 at 1:28 am

Thank you for compiling this symptom check list. It will definitely help me with my Dr. appt. this week.

joy February 11, 2013 at 12:04 pm

OMG. All the Above.

mrs sharon dearden February 14, 2013 at 11:30 am

thank you so very much for this article, it’s surprising to find all these little symptoms are related to just one ailment.
All these years from the age of (as far as i can remember) 13/14 i have been suffering and it’s only been just over a year now i’ve been diagnosed by my GP now i’m aged 43 with 3 children 2 being young adult ages.
my sister got diagnosed with ME roughly 15 years ago, i suspect my mother had it , but she didn’t know and i feel as though i’ve passed it onto my eldest daughter who has always shown signs of this from an early age, makes you wonder if, once someone in your family gets it is it passed on genetically.

medes123 March 12, 2013 at 2:29 am

i’ve experiencing most of the symptoms mentioned above

Violet April 28, 2013 at 5:01 pm

Hi have had most of these symptoms over the last20 yrs and have many of them know iv been on antidepressant s over 10 yrs have some other symptoms not on list also have a problem with my blood I go to Manchester royal for test regalary they keep changing the Diogenes they think its a platelet problem my children have the same problems and two grandchildren my doc sayes I can not get diongenosed with me while I’m depress don’t know what to do very worried about my dauther who suffers from more pain then me as avert bad back and is sent to pain control doctors but can not get any other help all though she as all the same symptoms iv been with my docs all my life and don’t rEaly won’t to Chang any advice will be welcome I think this is in our jenes my mother and granemare had same problems they both died young

Pat May 3, 2013 at 8:14 pm

List of symptoms more comprehensive than listed by Mayo Clinic

Najade May 31, 2013 at 8:32 am

HI, I have more neuro, cognetive, muscle weakness and fatigure symptoms. I am still wondering whether I have been given the correct diagnosis?? I was first told Myasthenia Gravis, given mestinon, which worked. Then I was told to see another Neuro, and another, and they all contradicted each other. Now they say its CFS and to get a good homeopath. Whatever. Can anyone tell me if I should be having all the pain symptoms. Luckily I don’t!! Just muscle weakness in one arm, and legs after walking. Arm weak all the time.
Look forward to getting some suggestions.
Thanks a million in advance

Kerry August 30, 2013 at 8:01 pm

I have the same as you, due to mostly nausea, cognitive, trouble with balance, weakness and tingling on left side only, visual blurring , I was sure it was MS, but neuro said no due to clear MRI and not having these symptoms be “visible” to her upon exam, so what is it I said ? She said she doesn’t know but as fatigue has been crushing the past month she said maybe its CFS, ( with a smirk on her face ) I don’t think she believes its a real thing. Try being in my body the past three months and you’ll see how real this thing is.

angela April 10, 2015 at 10:29 pm

How many people here have taken SSRIs or SRNIs or other antidepressant medication in the past. I tried to give up them up after 10 years. I now have chronic fatigue, and drug induced depression. I believe chronic fatigue is a by product of Antidepressants causing changes to my brain. I am suffering. Any ideas? Reingsting the medication after 6 months (I was well for 6 months) is no9t helping.

Joy lee June 30, 2013 at 7:00 am

I was diagnosed with post malaise ME/ thyroid disease around 6 years ago, and suffer from most of the above syptoms, which are slowly getting worse, I just don’t function with out my tramadol medication, they seem to work on my muscels, making them less stiff, although the pain is still there in my hips, knees and legs, the tramadol doesn’t always work, so a heat pad is used. What I find hard to cope with is the constant sickly fatigue, this illness controls you, I have tried to fight it many times, but always suffer the next few days after any activity, just doing a bit of cleaning can exhaust me to the point of putting me to bed, it’s also affected my immunnne system, now I have auto immunnne disease, and my body is intolerant to most antibiotics, food and the sun, besides that I’ve lost my appetite and can get full on very little food.i have constant infections in my sinuses and mouth too. It’s like a living death, which there’s no cure, let’s hope they find one soon.

Suzanne December 18, 2014 at 4:47 am

It would be interesting to know if you have had Botox in the past. The FDA forced the manufacturer (Allergan) to publicly admit that Botox does indeed cause Botulism. The symptoms include those listed by the author – as well as yours. My job involves collecting data on the legal snd social ramifications of pharmaceutical companies who refuse to abide by the law. After I became ill with all the symptoms listed on this site after receiving a Botox injection it didn’t take me long to confirm my suspicion. I have Botulism as does Dr. Sharla Helton who won her case against the manufacturer in Oklahoma’s Supreme Court. Botox is the pharmaceutical name for the most lethal substance on our planet called Clostridium Botulinum A. A cup of the toxin would easily kill every living being on earth. Botox has been around for over 20 years. I believe much of the mystery behind me/cfs/fibromyalgia/dysautonomia is actually Botulism – courtesy of Botox. If you are wondering whether you might be suffering from Botulism go to the Botox Support Community for more information and support.

Michelle Carolie March 19, 2015 at 7:40 pm


I’m curious as to whether or not you would be willing to discuss the affects of Botox, as well as its connection to Botulism, with me in further detail. I have a disease called Interstitial Cystitis, or bladder pain syndrome (also IC/BPS). A brief summation of this disease: it is a chronic inflammatory condition of the submucosal and muscular layers of the bladder. IC/BPS can result in a quality of life comparable to that of a patient with rheumatoid arthritis, chronic cancer pain, or a patient on kidney dialysis.

jade March 28, 2015 at 1:17 am

I have been diagnosed with ME now for 3 years. (I am 25) but I also have a stomach condition, gastric dysryrhmia, this means I have to have regular botox injections into my pyloric muscles, this then makes it so I can eat and drink and not live off of being tube fed. Ive been having the injections 5 years. Both things together are a nightmare!

Rhonda Maddux May 20, 2015 at 1:53 pm

i have severe, refractory Interstitial Cystitis. I haven receiving Botox injections into my urethra, bladder, and pelvic floor. The first time, it worked completely for two months. I had no pain at all, but I did have to catch myself for awhile. The second round was about 60% effective, I really did not have to catch much. Your bladder is paralyzed to an extent with Botox, but it wears off. It’s very hard for me to urinate anyway, though. My nerves aren’t functioning correctly. The third time I got a round if antic, it was basically ineffective. I have put off a fourth round to give it time to completely leave my body. I have a history of severe, unmanageable bladder pain, and I’ve tried a lot of things. I’m seriously considering bladder removal now, but most people don’t have IC quite that bad, so this is drastic for me. As far as any Botox side effects, besides bladder paralysis, the first time I got it, I woke up the next morning with my head feeling very heavy and weird. I had a Botox headache for a couple of days. But it did feel like part of my face had gone to sleep, especially on my forehead and around my eyes. It resolved completely in a few days.

Rhonda Maddux May 20, 2015 at 1:55 pm

Iim sorry, autocorrect changed my spelling. That is supposed to say “cath” (catheterize), not catch.

Pam July 2, 2013 at 4:25 pm

I have had me/cfs/fibromyagia for thirty four years and have just been diagnosed and I am now going to Me/cfs clinic I have been in a dark cloud all these years my mother was diagnosed with MS and previously with ME I truly believe that this has been ME as I developed the same symptoms as my mother even down to the same two lower front teeth falling out for no apparent reason, my. Mother god bless her I watched her deteriorate in agony as she went on to develop RA and I developed over active thyroid disease both autoemune diseases . I sometimes think there is a connection , my son has now developed the same symptoms whom I saw the sighns in his early years (12) I haven’t mentioned to him that I have had a diagnosis , and yet he keeps asking questions as to when I first noticed anything was wrong as I did with my mother I hope to god that
Someone finds a cure for this illness . All these doctors that say its in the mind then I suggest that you take a look at the family’s that are suffering from mother to daughter to daughter to son and now my grandchild . T his living nightmare is not living its hell and anyone who tells you it’s not real, then I hope to god they never get it themselves..

Heather wilton. July 3, 2013 at 5:19 am

just to say this is the best M. E. list to read its every symptom I have had this horrible M.E. for over 30 years so I do know it will never leave me.. I do get lots of good days.. Thank you for such a good LIST… Heather..

John McCool July 3, 2013 at 3:46 pm

The list is fine, try finding a doctor who has even the slightest idea on how to treat any of these symptoms. Most,if you watch close, eyes actually glaze over if you mention cfs/ me/fibro. They have heard it so much but instead of believing you they think you are faking it. Even if you find a doctor who cares, what are effective treatments, they are all bandaid fixes, they may help for a week or two but that’s all.
What we need is to find a cure and demand money for research.
The thing is we will all be dead before they finally come up with a cure, and right now all we are living is a type of living death!

sick2long December 11, 2014 at 4:46 am

Thats for sure John. I am sick since October 1992. Can’t work. In fear of loosing my house. Sick every damn day. Have tried everything. Treated for lyme for over a year. That didn’t help. Only 3 things have helped me to this day. One was kind of miraculous. I was down over 20lbs and had no appetite. The lyme MD did notice the large amount of white candida coating my tongue. I used to have to scrape this out of my mouth every day. He gave me an anti fungal called diflucan and within 2 days I was able to get out of my hospital bed and move around and my appetite came back rather quickly. This was great. I avoided sugars which yeast thrives on and I kind of have that under control now. The only other drugs are for pain and sleeping. Both are addictive but I can’t imagine how my life would be without them. I limit what I take but when your head feels like it is ready to blow up thank god for them. Trying an antiviral now. Had an extremely bad reaction two days ago but passed after one day.

Isaac January 18, 2015 at 7:54 pm

Look into Lufenuron, it is a candida/chitin destroyer. It was supposed to replace diflucan but such is the Big Pharma, there was no money in it. Also it has to be mixed with fat in order to be absorbed, so you can not just take it as a pill. It is available online or through veterinary clinics. it has NO side effects and has kept me candida free for years. Also for yourself, or anyone with CFS believed to be based in a virus, look into MONOLAURIN. There is a good company that sells this under the supplement name Ultimate Monolaurin. it has been proven to help with CFS and LYME. If you do have Lyme you should consider taking an enzyme that will breakdown biofilms on viruses…. I believe Serrepeptase may be the enzyme that would do this for Lyme. The same company that sells Monolaurin sells a biofilm enzymatic supplement, but I believe there are better on the market. God Speed!

Elle February 20, 2015 at 6:22 pm

Try cocnut oil (pulling and/or consuming) It is very beneficial in so many ays and naturally sorts out candida over growth. I also recommend taking pro and pro biotics. Tablet, sauerkraut etc. Has helped my tummy pain etc no end, and the oil rubbed in skin helps with thoses probs too. I do a low carb diet for same reason. Also I found vit b12 helps with headaches and mood.

It is a hard illness to live with.

Jennifer March 21, 2015 at 10:19 pm

That’s so true. You’d think that if a MD has a patient with CFS/ME that they would want to know about the newest research on the disease. But when I find something and print it out and bring it with me they get all dismissive.

Heather wilton. July 27, 2013 at 5:39 am

Hi I would like to say thanks to Pam for saying the Doctors thinks its all in the MIND.. I wonder how they would feel if they came down with this TERRIBLE ILLNESS.. I wonder how they would cope, I don’t think so, I have lived with this for 30 years.. THANKS PAM, HEATHER…

Kelly September 15, 2013 at 7:08 am

I have not yet been diagnosed with any disorder. However, I can relate to some of these signs. I have had no energy or lots of energy forever, has anyone have this happen to them? I was diagnosed with bipolar 14yrs ago. Therefore, I suffer more from depression than the highs. Maybe I also have CFS. I get so tired that I, at times, am unable to drive due to feeling like nodding off at the wheel. I am having all kinds of blood work done, as well as have had a Sleep Apnea test done, no results yet. I don’t suffer from much pain in my body, however, I do suffer from being lethargic, no energy. How were you diagnosed with CFS? Is there a type of test to take? Is there any meds that are taken to help with it? I have been on numerous antidepressants, anxiety etc., for my bipolar…

Any info., or advice would be greatly appreciated…



Jocelyn September 29, 2013 at 12:00 pm

I am soo scared I ave almost all d symptoms altho ve nuh bin to d hospital yet. And I dun even know what u all r talkin abt dis is scary

Håkan Knutsson September 30, 2013 at 11:25 pm

Hi all i have most of these symtoms but no diagnose yet but ihave more things that are wrong so they are working on sorting me out ;) Got a chronic lower back injury and adhd and the symtoms above and more. So you people are not alone! I also want to give an advice to some of you that are using Tramadol and other meds like it. My wife have fibro and more diagnosed and we both used tramadol before but im on heavier meds now but shes still on the tramadol level of meds. But we hated all the side effects and that u couldnt get tramadol in 50mg retard(extended release) but instead you had to use the 100mg to get that effect, and then u have all the bad side effects involved with tramadol so i decided to really look into a substituteand found one. So here comes the advise all of you should look up a medicine called GEMADOL wich is just another form of tramadol but u can get retard/extended release from the 50mg pills and the effect is alot better and atleast from what i have been reading and from my wifes experience of these pills the side effects are down to a minimum with the GEMADOL. We live in Sweden and here the doctors get a advice or proposal on what drug to give the patients from their computer system based on the problems etc BUT they can also just search the system for a certain medicine and prescribe that instead and as said these Gemadol is way better and when we asked our doctor if my wife could get Gemadol instead of tramadol he just said sure and gave my wife a prescription for it without any problems or questions. We have given this advice to alot of people and it works good for all of them. So please look up Gemadol to lessen the stress on your bodys from the medicine you acctually need to live as good as possible! Hope it helps someone! Kind Regards Håkan in Sweden :)

eira gregard January 14, 2015 at 8:29 am

Hello! My name is eira Gregard and have been diagnosed with fibro chronic fatigue and have plenty of symptoms for two years plus! I am in USA but being Swedish and want to go home and get treatment I like to ask hakan how the doctors are educated about this horrific disease. I live close to Lund and have the hospital there. After cancer surgery and very recently broke my arm all the symptoms have gotten so much worse and I have more of this crazy feelings of being blocked in my brain.

Please HAKAN looking forward to hear from you! Eira gregard

Dawn October 22, 2013 at 2:59 pm

I’ve had M.E. for the almost 5 years and it’s been 5 years of hell and it’s only moderate (!) goodness only knows how it is with those who have it severley, my heart goes out to them, because this is hard enough. The list of symptoms made me squirm in my seat as I read through them and IDENTIFIED with many of them. I recently started getting faint which is new and I don’t like it, it makes me afraid to go out alone and my gp (who’s very supportive) has advised me not drive until I’ve had heart tests and they’re clear. I’m complyiong but it’s SO hard, another piece of my independence and freedom is gone, but hopefully temporarily. I’m going to join the ME association and have ordered some information leaflets, because it’s not just hard for me but for my lovely family who have to live with me. This is a silent and often solitary illness with much prejudice, we need a voice.

Kathy November 6, 2013 at 2:50 pm

I have had CFIDS/fibromyalgia seemingly since childhood, but doctors have also told me they are/were certain that I have M.S. and myasthenia gravis also. I don’t know if I have them too; oddly, a dog I adopted from a rescue group suffers from many of the same symptoms, including hypothyroidism and muscle weakness and atrophy.

I am 51 years old now, and it’s not getting easier. I will be prescribed medications that initially seem to work for me, and I might get a good two or three days of 25 percent of the energy I used to have when I wasn’t as ill, but the symptoms quickly return. If more men had these symptoms, I’m sure there would be a cure — or at least better treatments — available.

I have been on disability for years, which I hate because I loved my work, but I became ill with tachycardia due to an irregular arrhythmia/heart beat I didn’t know I had as well as experiencing sudden episodes of amnesia, not knowing where I was, where I was going, what I was working on. I desperately tried to get off of disability and keep working but my boss insisted and she was right. I have only gotten worse. I cannot imagine having such complete lack of control over one’s mind and body while trying to work.

If I knew this was coming, I would have lived my life so much differently than I have. I would have taken more vacations, said “no” to working overtime and taking on big projects, had more fun, spent more time at home with my dogs and taking my nieces and nephews out to the fair, to museums, restaurants, movies, etc. I would have saved more money and tried to hold on to at least one friend I had in my “former” (healthier/not as sick) life. Because a lack of help has brought on more stress and more illness.

I would advise everyone to not push yourselves if you have any control over your situations at all. Take all your vacation time/paid time off and then some. Ask for reduced hours. See if you can live on less than you are today. Don’t worry about what other people think. They don’t have to live this non-life we are living.

Alison November 19, 2013 at 3:33 pm

I am currently off work with yet another bout of CFS/ME. Apparently my symptoms are classed as ‘mild’. Well if this is mild I would hate to be moderate or severe and my heart goes out to those who are.
I have decided that i need to change my life and stop fighting this illness. I thought I could beat it by struggling on working full time, taking my dog out for long walks and generally continuing being active just like I was before this CFS/ME first started. I have already requested my employer to reduce my hours to part time, have employed a dog walker and now use pacing techniques to enable me to at least do some activities. I have also asked my GP about the use of LDN for CFS/Fibromyalgia but he knew nothing about it and has asked me to print off that information for him to review at my next consultation with him!
I have found this site very informative.

joy Hillman December 5, 2013 at 8:58 pm

hi Dr. Berne: I hope you are doing well. Thank you for all of the help you’ve given us. : )

Nicole February 21, 2014 at 10:36 am

Thanks for providing this comprehensive checklist. I am sure many will continue to find it extremely useful.

Victoria Daniel March 2, 2014 at 3:01 pm

It’s great this doctor can help family and friends of patients with this awful illness. I’ve had it for nearly 6 years and still my friends and family don’t understand it completely. Hopefully by reading this they can understand the daily issues I face!

Simon Teale April 9, 2014 at 2:50 pm

i am at the stage of being transferred to specialist cfs hospital i have had more or less all of the symptoms at different times,my question is has anybody out there tried and succeeded in getting pip

sharon barnes January 3, 2015 at 7:32 am

Hi Simon…i am just about to go to appeal with PIP,,,it has now been classified by the DWP as a neurological condition and is also flagged up in recent papers by a Professor Harrington, as one of the Fluctuating Conditions.
ATOS seem to have discounted most of my evidence, so i will have to put myself through the stress of the panel.

Randy Nordman May 7, 2014 at 2:10 am

I have had severe ME/CFS for appx. 12 years, which went un-diagnosed until several months ago.
My symptoms were very severe. I slept 20-22 hours every day for 4,5,6,7,8 days in a row. When I came out of that cycle I would feel “spaced out” and almost disoriented. I would be awake for about 2 days and then back to my sleep cycle…This laste for 5 years straight. I lost (2) business’s in the process. I saw every Dr. (specialist) you could possible name. Put on amphetamines just to try and keep me awake, anti-depressants and anti-virals. All to no avail.
I recently was accepted/qualified into a clinical study/trial at Stanford University..(only 120 patients in the U.S. were admitted). The results so far are almost not believable! I feel like a new person… my friends and family are astonished in my recent transformation. The most profound change for me in all this is that my head is “clear” and can actually think straight. I would like to share w/ people (in any fashion) w/ my story, experiences and (knock on wood) my marked improvement. I share many common experiences and frustrations w/ everyone on this site and hope maybe I can be of some help to some of you…. God does work in mysterious ways!
Thanks for listening….Randy

Bob F May 7, 2014 at 2:23 pm

Hi Randy, I’m ecstatic to hear about your treatment success!! How can I learn what Stanford did for you….treatments et al? Who should I contact? Any practitioners in Orange County? Thanks a bunch! Bob Feigenbaum

Marie May 31, 2014 at 3:00 pm

Randy, could you say more about the treatment appraoch at Stanford. Thanks. M

Dagny May 31, 2014 at 4:42 pm

Yes, PLEASE share any information you can! I’m so eager to hear what you did and how it’s helped. I’ve been struggling with this for the last 2 years and have seen every specialist and put on every drug imaginable– all to no avail. Still have all my symptoms and seem to be getting worse as time goes by, even with the current meds my Doc has me on. I have been clinically diagnosed with ADHD/Generalized Anxiety Disorder/Fibromiallgia/Migraines but I’m still having much of the problems on this list.

Anyway, I’m happy that something has worked for you and hope that it continues to! Please share the information :)

michelle July 17, 2014 at 6:42 am

hi randy
would you be willing to share your new changes and how they have came about – ie therapy, treatments etc

anne September 6, 2014 at 2:55 pm

Please, please can you help me with any information you have on how to get well.

candace January 5, 2015 at 3:54 pm

I no Anne I wish we all could get well and find the

j. jones November 16, 2014 at 11:56 pm

i am 70 years of age, a college grad., and never been afraid of work. I say this to let you know where i’m coming from. I was dianosed with cfs about 15 years ago. My Dr. in Jackson, ms. actually closed his practice and went into an administrative position, because he said that he was trained to cure people and could not do this with people with cfs. I either cannot sleep or sleep to much. The pain in my muscles are terrible. I can’t even put my own socks on. Don’t let a Dr. tell you it will get better with time. One thing i have learned over the years is not to order things over the internet that says they have a cure. Get use to when you tell someone what you have they say “I must have that because i’ m tired too” . The only thing that really matters is for your family to understand. I have had mono. Some Dr’s think this could be a contributor and also have a t-cell screw up-to many or not enough, I forget. Good luck and God bless.

Sandy Brown February 9, 2015 at 9:55 am

Please share with me the protocol that Stanford used. Was it Valcyte or one of the
other antiviral drugs? Please let me know.

JB February 25, 2015 at 3:00 pm

Why would you tell us that and not share any information about it? Tell us what the protocol is please, that’s incredibly rude.

Bob F May 7, 2014 at 2:18 pm

I’ve had CFS since 12/09….trying to find a real specialist doctor in Orange County, CA
Thanks for your help!

peter May 12, 2014 at 12:37 am

pain and musculer weakness

peter May 12, 2014 at 12:41 am

am very gratfull for the list it help a lot, Thank you.

louise May 19, 2014 at 2:53 pm

Thank you for this list. I am concerned as I have been suffering with M.E twelve years, but two years ago began having seizure like activity. I was sent for testing for POTS they could see a drop in blood pressure but not significant enough to call it POTS. I had epilepsy tests nothing showed, the neurologist suggested I was suffering form psychogenic seizures and recommend psychologist, when I spoke with other M.E/CFS suffers few had heard of seizures in the illness. Can anyone shed light on this for me, is there research etc.

Thanks for your time and precious energy

Heather July 3, 2014 at 3:54 pm

Hi Louise, I have had cfs/me for 10 years and diagnosed with Fibro about 18 months after. I was also diagnosed with hypothyroid Jan this year. I have just been referred to a neurologist because my seizure-like episodes which I have had for the 10 years are worsening. I have even become temporarily paralysed down my left side during some of these episodes. I never lose consciousness but cannot speak and struggle to breath. Most times I cannot keep my eyes open. My arm/s shake violently which is excruciatingly painful and sometimes my elbows lock in position. To an outsider this looks like a seizure but it isn’t. My MRI scan was clear too. The neurologist has said this May be a form or migraine. Interestingly it is reckoned that 75% of cfs/me suffers have migrain.

Julia Rowland February 25, 2015 at 2:13 pm

Hi Louise, I too have had tonic clonic seizures and spent 3 days in High Dependency Unit in hospital. The seizures continued for 3 days usually after exertion like sitting up in bed. Interestingly, they just finally reduced in number enough for me to go home but I hadn’t eaten much in those 3 days as everytime I sat up I had a fit. I managed to eat some bananas but not enough to stop the hunger. I was later diagnosed with Migraine Complex (for want of a diagnoses) but somehow I have also been labelled as having ‘pseudoseizures. So I get absolutely no help from the medical profession when I’m taken by ambulance to the hospital with a seizure. I have told my family not to call an ambulance and I’d rather die than go to a hospital now. Years later I’ve stopped having them with the CFS relapses but I’ve also adopted a no carb diet and feel much better. IBS gone. Weakness, exhaustion, dizziness, brain fog and nausea haven’t sadly. No more hayfever too! Not cured but one symptom reduced. I hope you have some ‘good times’ in the future.

louise May 19, 2014 at 2:55 pm

Thanks for your time and precious energy

Mary Beth Williams June 6, 2014 at 2:35 am

Omg!! Im not going insane afterall.
Over the course of Couple of years, I have been making frequent visits to the doctors, complaining about 69% of these symptoms that occur on a regular/daily basis.
The past 21 days have been the worst ever.
The hot but cold sensation, headaches, lethargy spending 95% of the day on the sofa with no energy at all to move.
Simple things like washing dishes make me breathless my mouth constantly dry thus making me thirsty.
Ive lost 11lb due to loss of appetite.
I did mention chtonic F Syndrome to docs before, but they made me feel like a hypochondriac!!
I shall take this list to the doctor. I am going out of my mind and this however stressful the diagnosis, will enable me to worry less and deal with my symptoms better.
Thank you

angela April 10, 2015 at 10:39 pm

have you recently (last 12 months) come off antidepressants?

pam June 16, 2014 at 10:17 am

How many of the symptoms does one have to exhibit to receive a diagnosis of M E?

GRACE January 14, 2015 at 1:50 pm


Meg August 2, 2014 at 4:24 am

Thank you so much for this list, I have wanted to put something together myself but I’m just too sick it never happens…thanks a bunch….does anyone know how often we should do as to not confuse the doctor, I was thinking of doing it daily to see any connections….also, I’m curious if any of you have taken a fluroquinolone antibiotic like levaquin, Avelox, cipro, among others, much research is being done on this, I was given cipro four or five times and it was like a time bomb went off it also doesn’t happen right away while taking, but many symptoms appear during, shortly after even months after taking….just a thought for you all…..I appreciate any comments as I have been suffering severely!

Sara August 21, 2014 at 9:29 pm

Hi – I too have wondered about fluroquinolone antibiotics as a cause for this illness. I have been prescribed the antibiotics several times for sphenoid sinus infections as well as severe bronchial/pneumonia infections. After one of the first prescriptions, a 21 day course for a 98 percent oppacification of my left sphenoid, I ended up in bed with a high percentage of the symptoms for CFS. For nearly a three month period, and with no doctors here in the twin cities with any answers. Continued symptoms of illness for nearly a decade. I no longer trust doctors, I too believe medicine to be a money game, not a wellness business. I think the cdc already knows what is causing this illness. Big pharma is a big business, Pacs can push a lot of buttons in our government. Misappropriated funds for research and the people responsible have had very little retribution.

sherry April 27, 2015 at 5:03 pm

Hi…I just saw this n had to write you. I had pneumonia n they gave me Levaquin. I had a bad reaction after a few pills. I got cfs after, but always blamed the pneumonia? ? Now I wonder??

debbie nelson August 5, 2014 at 2:22 am

Sooo. Can Randy share anything with us?!?!?!?!?! What did they do?!?!!? PLEASE Help! We have seen soo many dr.’s who have not got any idea and make us feel like idiots. I don’t know how much longer my husband can keep going like this. Please , please share

Jackie August 20, 2014 at 7:43 pm

Doctors responses can be very frustrating. I went to a doctor at my clinic that I liked and felt was really interested in my health having seen her over many years. After coming across Fibromyalgia information by accident one day and the links of CFS I started researching (although difficult with the brain fog) and after two years decided to get a referral to a rheumatologist as it all now made sense. I looked back on my history and realised that I had vary tests for headaches, low back pain and bloating, heart pain, etc which found nothing, was costly and made me feel like a hypochondriac. So because of this I let a lot of things go, had put on weight and just put up with pain etc. Felt as though if I said I was tired they would say well you are working, have young kids you would feel tired. But this wasn’t just tired it was exhausting and there is nothing worse than people saying ‘we all get tired’ I just wanted to scream because no you don’t get tired like I do.

So I spoke with this female doctor and I could not believe her response. She seemed annoyed with me, started checking my movements and flexibility. Her comments were along the lines of not all rheumatologists are convinced of this, I get a pain in my ribs sometimes that’s nothing, we will run some rheumatoid blood tests and IF any of them are positive then I will consider referring you. Well we all know they weren’t going to show anything. I felt really upset after I left by her attitude. I didn’t ring for results for over a week, but had resolved myself that I was going to get a referral regardless of what she said and remembered something Dr Oz had said – when you go to see a doctor that is YOUR consultation and you should help drive the conversations etc.

When I rang the practice they advised that she had gone on holidays. I told them I was just getting results and needed a referral written so could another doctor look at it and make a referral. No – you need to come and see a different doctor and explain to them why you want a referral in order to get one. Now really annoyed but determined. I made an appointment with a doctor there I know ( a much older one), also made an appointment with a rheumatologist I had researched and braced myself. Well I started speaking with him and going through my symptoms and straight away he said “well we need to get this sorted and refer you”. I was shocked. Told him I had made an appointment and he asked who it was, told him and he said “Oh good, he should be able to help you”.

Currently working through various assistance with sleep, nutrition, pain management etc and feeling much more optimistic. Looking back I realise this started around end of 1998 after the birth of my second child and feel frustrated that it took so long to recognise, seek assistance and get some help. I now go into an appointment with the thought that they are working for me and if I don’t think you have covered or listened to something then I will go over this before I leave. Don’t be afraid to change doctors within a practice or to see another elsewhere.

Hope September 27, 2014 at 6:10 pm

I have cfs for 2 yrs,killing me every day espicially the cognetive part and the damn fog and blank,though i have 80% o the symptoms in that list, and hey im a dr specializing in family medicine (my board exam is in 3 wks :$ it is hell i know and i havent tll anyone in work or my family bz of the stigma i guess (afraid of being judged abd defined by my disease and thinking im incompetent or A DANGER to my pts) i have to struggle alone :( AND preteng im normal while im screaming from the inside with pain and agony

Ms. A October 6, 2014 at 5:29 pm

Since the symptoms are so similar, is there any way this could be related to fluoroquinolone toxicity?

angela April 10, 2015 at 10:44 pm

That or Antidepressant Withdrawal Syndrome, both very valid. I believe mine is drug induced. Wish I could sue the b+++stards.

Adeelia October 20, 2014 at 6:11 am

Three years ago, I got moderate M.E, following a root canal and Glandular Fever. Root canals to lead to serious toxic systemic chronic health conditions. I also have several mercury fillings. My M.E could have been caused by any of the above, or a combination of the above: I will never know. TryinTwo and a half years later, after having radiation after radiation (Trying to rule out many other conditions with X rays), they finally realised I was correct: I had moderate M.E. and Fibromyalgia. Unfortunately after suffering for three years with it, and nobody taking any notice of me within the N.H.S, I am so ill from M.E that most of my life is spent in bed or crying due to pain and depression. It has become increasingly very difficult to leave the house, and sometimes I am so weak that I use crutches. Three years later I am STILL waiting to see an apparent ‘Specialist’ (My appointment is next month, unless they push me back…again. The system treats us like we are insane and repeatedly ‘Fobs us off’, to the point where we just iller and iller. I have never felt so ill. I feel like three quarters of me has died.
Please can someone in a higher place do some active, urgent research, as it is destroying our lives. A post chemotherapy drug is all well and good, but how much short, mid and long term research has been done on it for M.E? If the Government bothered to spend some more time and money on research, maybe we could have the chance of getting our lives back or treat it early on, so it doesn’t progress or we don’t degenerate.
I am only 33, and I do not know how much more I can bare.
Thank you for reading.
I am 5′ 9” and 7 stones 4 pounds, due to what M.E has done to me. I feel so sick I sometimes cannot move for symptoms. Sometimes I feel suicidal.

Matt December 16, 2014 at 2:23 am

Adeelia, I feel strongly for you in this moment. I feel helpless as well, and falling into depression is almost a 100% certainty with these symptoms. I am 27 years old. 2 weeks ago I was playing 3-4 straight games of basketball and I felt great afterward. I was in the best shape of my life. Now, I have lost 14 pounds in 2 weeks, and I feel as if I am going to have a heart-attack if I walk up the stairs too fast.
Exercise has always been my therapy. It has been my antidepressant. I love riding my road bike through the beautiful hills of my home town. I love stepping onto the basketball court and playing my heart out. I love playing soccer with a group of 130 friends who I have come to enjoy very much but with whom soccer is our only connection. I love to put on my wetsuit and jump in the ocean with a speargun, hold my breath, dive to the bottom and wait – viewing the beautiful scenery. I love to scuba dive with my mother in the channel islands in the summer.
Now, I am afraid I will never be able to do these things again. I may have to find a new way to live. And it scares me. But please don’t lose hope, because if you have no hope it makes it difficult for me, who is just beginning to deal with these symptoms, to have hope myself.
Much love, and I hope you are feeling better. Please contact me here if you get notified of this message. Regards.

Candce December 22, 2014 at 1:29 pm

Did u find any help or answers. It’s awful to be so ill.

Suspected Sufferer February 15, 2015 at 8:05 am


I had read most of the posts on here also looking for answers. I have not been diagnosed but have a lot of the symptoms. Feeling like your only a 1/4 of your former self I suspect is what a lot of us are going through, don’t get upset because i think when we have strong emotions it causes a chemical reaction and makes it worse. I have been on my journey for the past 3 years, I have tried some medication with no luck. I find that what helps me to get through the day is to try and enjoy everything around me no matter how small even seeing the sun come out today has made me feel better. Stay connected with people, take pleasure in the little things, read and watch videos to get more information, learn how to meditate and relax and if you are religious embrace God. I find listening to people like Abraham Hicks helps me to meditate and feel better. All the best to everyone and thanks for sharing.

Suspected Sufferer February 15, 2015 at 8:31 am

Hello Gemma,

Read your post after leaving a couple of replies about staying positive and using mediation. I love your suggestions will be trying them, I hope others will share what works for them.
I sometimes worry about getting very ill because of my little one as well but I don’t think it helps the situation :-), I try to think of myself doing things and getting back to usual activities.

All the best and thanks for sharing

Dawn March 25, 2015 at 11:02 am

Hi I been feeling very ill for months seems like I have these symptoms I don’t know where to turn. All over pain fatigue like I don’t wanna be touched sometimes . No energy . Aniexty which makes it worse. I feel lost don’t know where to turn. Anyone have helpful info can contact me email. Need help:(

Bob Dennis December 5, 2014 at 7:44 am

In September 2012 I was admitted to hospital for acute Uvilitus, and ever since then, I have experienced the vast majority of these symptoms. However, I’ve still not had a formal diagnosis. Although I think I have CFS, I do have a continuous tender point on the bottom of my left foot, which it makes very difficult to walk. I have since been referred to a foot specialist, but know this is not a physical abnormality. But can’t convince my GP. I will use this list as a starting point, as in the past it is problematic presenting such global, diffuse symptoms in a rational way.

Matt December 16, 2014 at 2:09 am

Wow, I have at least 80% of these symptoms :-\
I contracted a flu virus 13 days ago, and I’ve suffered from basically all of these symptoms since the day my fever broke. This is horrible. Am I going to feel this way for the rest of my life?

Candce December 22, 2014 at 1:19 pm

I have symptoms when I get hot. From nausea to tremers feel ill weak shakey. Tinnitus vertigo. Severe fatigue. Normal brain scan. Women 39. Sluggish sleepy. Wake up ever 2,3,4 hours nightly. Freeze at night. Sweat all day. Pain joints scoliosis bulging neck iDisks anxiety not well. Ne% hi. Esr high. Low hct. That’s all I have to go on. Drs act like. Crazy. What can I do. I have bladder frequency bowel roaring haft to go fast. Can’t hardly smell last three years.

Candce December 22, 2014 at 1:24 pm

Oh yeah Ana was neg. have trouble swallowing dry foods knee ripping pain when getting up swollen sac on knee like fluid MRI was normal study.

Candace December 30, 2014 at 11:18 am

You all might want to consider lyme. The test for it has a substantial false negative rate, yet the symptoms above are common with lyme, so it is necessary to find a lyme literate MD (LLMD).

candace January 2, 2015 at 7:53 am

Isnt lime linked with ticks or something. I haven’t had a tick bite. Im scared of those
also I have chronic sinusitis smell loss, hearing problems and tinitus . With vertigo

candace January 2, 2015 at 7:57 am

Weak legs shake when walking down stairs arms tire when comb hth air or hold something hands start to cramp and arms feel heavy painful when holding them up.hands shake a little while typing . Or holding .c up sometimes.

Laurie January 3, 2015 at 9:47 pm

I would get checked for lyme. Most people don’t recall a tick bite. They are so tiny and can’t feel the bite. Honestly, I feel there are many more vectors for lyme…than just ticks. Do you have skin issues such as rosacea, acne or rashes? How about an itchy scalp or eye brows or lashes? I feel demodex mites have a role in all this.

Laurie January 3, 2015 at 9:58 pm

I have 90% of the symptoms on the list and one neurologist recently suggested I have Parkinson’s Disease…but I’m not taking those dangerous meds…because I’m not so sure about that. I was diagnosed with Fibro in 2005 (but many doctors don’t take that seriously). The Parkinsonian symptoms started after I was exposed to insecticides last year. I had my house commercially fogged for fleas. I wonder if that was a trigger for the PD symptoms? Because with fibro, I have chemical sensitivities.

candace January 4, 2015 at 9:02 pm

How do they treat limes. I know of someone who had it.

mr answer January 12, 2015 at 2:16 am

NO MORE STORIES ABOUT YOURSELVES! WE ARE ALL HERE for the same reasons. let’s work this out together (because doctors obviously can’t…or won’t) personally I am leaning towards this fluroquinolone problem.

is there a way to detox fluroquinolone?

is there anybody that has defeated this?

can we raise an awareness publically? there is enough of us.

fiona January 13, 2015 at 4:38 am

I live in Australia & have been struggling for the past 4 years, since I turned 40, although struggled with fatigue all my adult life. Doctor always doing blood tests, always pretty much normal. A year ago my hormone levels finally indicated I was going through early menopause. Less than a year later I am now post menopausal with hormone levels that low even a doctor from the Australian menopause society had never seen. I have in my despair joined the Australian menopause centre where I pay $325 quarterly including medication (bio organic) & phone consulting. They did further testing & I have finally been diagnosed with CFS, as my testosterone & DHEA (described as the mother of all hormones) was pretty much non existent. I have been put on progesterone & now a testosterone/DHEA cream that is not approved in Australia, only USA, had to sign up for experimental. Have been told this will take 6-8 weeks to work, 3 weeks down, will be commencing oestrogen in a few weeks. I really hope this works as am going downhill fast. Worst thing I work in a medical centre & had to go elsewhere as was constantly told ‘don’t think about it, or, I don’t know what else to do’. Have been to 2 useless gyno’s, have shocking sinusitis, been to 2 ENT specialists, a few years back was that I’ll until I found I have all these food allergies, corn, cocoa, dairy, beef & dust mites. Now I am waiting to see a cardiologist. All from my darn hormones that everyone ignores. I am struggling to keep my full time job, dropping Wednesday’s, sleep a lot, even in my lunch break & when I am really tired my joints & muscles are so sore, have had to stop exercising now too as agtivates it. The worst thing is that I’m a perfectionist & a workaholic & is killing me barely being able to do housework etc, so very depressing, oh plus I am now seeing a psychologist. This is not living, it is barely surviving.

fiona January 13, 2015 at 4:45 am

Oh plus a year ago I was diagnosed with vestibular migraines, which when I was put on a light contraceptive pill for my menopause, they almost immediately ceased & I had it constantly for 3 mths prior to taking the pill

Alexandru Matei January 23, 2015 at 11:56 pm

I am going through a terrible flare right now, and have most of the symptoms listed above, like someone said in an earlier posting, I feel like sleeping 18 hours a day just to forget about the symptoms, I get severe depression and racing thoughts as well (have been ill for almost 10 years).

I have many other conditions on my spine, two brain lessions, chronic sinus infections have been diagnosed with lyme by my LLMD (not sure if it’s lyme). It’s a mess.. and I have other diagnosis but I know there is more going on…. as soon as I wake up I feel like going to sleep again … This is my 4th flare since 2012 after contracting chicken pox at age 28. For me it comes in flare where it last months then I am relatively fine. Last year the flare started in October and lasted till the end of January.. this year the flare started again in October and I am in a very bad shape.

Has anyone thought of CNS lupus? Im seeing a neurologist and will do MRIs again and a rheumatologist. I sometimes believe that people labeled with ME/CFS have not had enough testing and they might suffer from different illnesses.

nina February 7, 2015 at 12:01 pm

I have been diagnosed with CFS by my neurologist. I do have Fibromyalgia also, but to be able to get that diagnosis was [ not really proud to say, but needed to stress] a great achievement. I suffer from numerous other ailments along with those. Spinal Stenosis of the neck & back. Degenerating Bone Disease of the neck & Back. Different types of myalgia’s. My knees ache 24/7. I have what is known a Severs Disease in my left foot, and it causes excruciating pain daily, and it does NOT go away. I have Carpal Tunnel Syndrome. I go for injections at a very high rated Pain Center and my doctor is fantastic, but the pain is always there. I never wake up in the morning without pain.

Suspected Sufferer February 15, 2015 at 8:22 am

Hi Nina,

I’m sorry that you have the symptoms you mentioned, I like that you sound positive as you did not complain once! Wishing you all the best, may your positive energy get you through, hope you get better soon.

Sandy Brown February 9, 2015 at 9:52 am

Why hasn’t Randy Nordman answered on this site as so many people are anxious
to hear what Stanford did to help him? Did they put him on Valcyte or one of the
lessor type antivrals. We would all love to hear the protocol used.
Thank you, Sandy

Gemma February 11, 2015 at 1:52 pm

Hi, I’m 25 and have been suffering from problems for 5 years, connected with anxiety and depression, I’ve now developed dizziness and swollen lymph nodes, I get head aches, bad sinuses and lots of others, it’s wore me down, I now am a hypochondriac afraid constantly of becoming seriously ill.

I have a young daughter and just want to raise her well.

I like natural cures and don’t take any prescribed meds, the things that have helped me were;

Reiki healing

Eating more raw and organic fruit and veg


Cutting out caffeine

Natural news has a good article on CFS look it out, might be worth a read and help someone.

Good Luck everyone, and much love

deborah February 27, 2015 at 9:20 am

I have answered. 36of the questions. Yes what does that mean

Lesley March 11, 2015 at 12:52 pm

I have been battling this for many years. It is worse and more prominent now. I have been trying to get disability for the past 5 years and they have denied me 3 times. How can I get this disability. I have gained weight also because of my depression. I don’t take pills for depression because I am not a pill taker. I am so tired all the time. I cry everyday. How can I get the treatment/and disability for this? I can’t even make it to my lab tests or my therapy appointments. I constantly feel like I have ran a marathon. I have severe sleep apnea also, that is Central sleep apnea, meaning there Is another underlying cause to why my brain always shuts off and I don’t breath during sleep. Any help is appreciated. My email is

Jennifer March 21, 2015 at 10:11 pm

I have a lot, but not all of these symptoms. But some are hard to tell because I also have ADD. So I’m used to cognitive problems. Also before I got CFS I already had clinical depression. I take Zoloft for the depression and it has been a miracle drug for me. I have normal ups & downs, but I usually have a good attitude and if I do get upset it passes soon. But the flu like fatigue has changed my life. If I really push myself to get up and get ready and go out to shop or have coffee, the next day or 2 I have to rest and I often feel so tired that even brushing my teeth seems like a huge effort. When I am out Inseem fine to people so they don’t beleive I’m sick. No one see’s me on the days when I can’t leave my Apt.

celia March 26, 2015 at 8:27 am

In response to Lesley, I too have been turned down for disability benefit a few times, most recently today i got my letter from pip and had 0 points. I dont understand why, but it is upsetting to be made to feel like they think you are lying and trying to scrounge. I just want you all to know that you are not alone. A little research via google just shows there are so many of us in this situation. I tried going back to work and ended up using all my sick days, 28 weeks in total, and losing my job again as im not able to function on a day to day basis.
It is bad enough to have to deal with a life you hardly recognise as to what it was before getting ill, then numerous tests as your dr goes through process of trying to diagnose, then endless waiting lists for treatment that you have to travel to ( as your local hospital doesnt have a clinic for ME/CFS )and it doesnt help anyway, and you end up giving up, and then to be told that you dont qualify for assistance is like a triple whammy.
I have tried different therapies, CBT, diet, anti depressants, counselling, supplements, to name but a few, not to mention my fruitless attempt at ‘total denial’, trying to tell myself it is all in my head so just get on and do stuff, with disastrous consequences of relapse.
I even did a clinical trial for graded exercise therapy, hoping for a cure.
incidently I also suffer from rheumatoid arthritis and wonder if anyone else with ME/CFS and fibromyalgia has developed this as well?

Wendy April 5, 2015 at 6:21 am

I feel all your pain ,have suffered from fibro and cfs for the last 10years and have searched for answers to find a cure ,and your all right unless you are a victim of this life sentence illness know one can begin to realise how you feel ,the best help for me over the years has been the lightning therapy by Phil Parker , I felt better even reading the book , then went on the course you should take the time to look it up online and see what you think good luck x


angela April 10, 2015 at 10:30 pm

How many people here have taken SSRIs or SRNIs or other antidepressant medication in the past. I tried to give up them up after 10 years. I now have chronic fatigue, and drug induced depression. I believe chronic fatigue is a by product of Antidepressants causing changes to my brain. I am suffering. Any ideas? Reingsting the medication after 6 months (I was well for 6 months) is no9t helping.

Alexi April 18, 2015 at 5:49 am

This is the best, comprehensive list I’ve seen anywhere !
Damn it ! I can tick all of them !!

cjon April 26, 2015 at 2:18 pm

I have been ill for over 6 years and I have episodes of feeling better that last for maybe a week. I still work full time and I’m trying to do the best I can, but I’m off work AGAIN with a new symptom arising every time I turn around it seems. Anyone know a good doc?

Gina May 7, 2015 at 4:53 am

I have not yet been diagnosed with any disorder and i have most of this symptoms and suffering for 3yrs now. Thank you for compiling this symptom check list. It will definitely help me with my Dr. appt. this week. Thanks so much

Gerry May 17, 2015 at 6:16 pm

I have suffered with most of these symptoms for over three years. In trying to find something that may help get my life back to even half of what it was, I did stumble upon something that I am not sure is common with CFS patients. I could not understand my new unsteadiness, balance, coordination, etc. and I found the romberg test to try. I was shocked when I tried it at home, then told my GP, who referred me to a neurologist, who has ordered a brain MRI. I did read on a website that the brain images of some CFS patients appear similar to those who have suffered a stroke. The wait and the results of the MRI are months away. I don’t know if my loss of balance, etc. is part of CFS or yet another issue such as depression that has spawned since my world fell apart 3 years ago. I would like to know if GPs could add the simple romberg test as one of the initial tests with patients complaining of CFS symptoms?

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