I have ME/CFS, AMA!

Are those meds for specifically for your condition? Naltrexone is for opioid addiction and valacyclovir is for herpes.

ME/CFS is only sort of kind of thought to be a thing (many/most feel it's a cop out/garbage bin "diagnosis" like fibromyalgia is), so there isn't exactly a standard treatment. Which is why people tend to throw everything but the kitchen sink at it.

That said, it makes no sense to be on naltrexone and valtrex. At least the charlatans at the "chronic Lymes [sic] clinics have the decency to use the correct treatments for the diseases their patients don't have [e.g. treating for imaginary babesiosis/borrelia/anaplasmosis with the treatments that do cure true infections with these organisms].

only sort of thought of to be a thing

it's very real to me. I spent many years in the "severe ME" stage and entirely bedridden and unable to care for myself. i haven't had so luck from low dose naltrexone, but valcyte has worked wonders for me (probably reactivated epsteinbarr).

That said, it makes no sense to be on naltrexone and valtrex.

they've made massive difference in my, and many other patients symptoms. I don't understand the segue into lyme territory, we're discussing ME.

yes, they are. low dose naltrexone is an experimental therapy used on patients with ME and MS and valtrex, valycte have proved immensely useful in a subset of cases.

How come you're taking an antiviral and opioid addiction drug? I have something similar to ME/CFS and while I'm not any pills, I've tried them all to deal with the pain. Those two don't seem like they'd be much help to me.

Naltrexone can be diluted and used in low doses to help many immune disorders. I take 3 mgs for MS, but I get it compounded.

Ahh, I was not aware. Even then, it seems a pretty odd choice of medicine for ME/CFS from my own experience at least.

we think ME/CFS is at heart something like AIDS or chronic lyme: the reactivated herpesviruses seen in so many patients are a result of immunosuppression. not enough to kill you but enough to make you very miserable for a very long time.

For someone with no prior knowledge: after reading stories of severe ME; such as of Sophia Mirza, the young woman forcibly sectioned in the Netherlands, Whitney Dafoe, and Alison Hunter, it is very clear that this is a devastating disease with something(s) major biologically wrong.

Why do you believe there is such resistance to treating the disease with seriousness, by the Government, the Media--who usually use the picture of a woman sleeping on her desk-- and society in general?

Also are there any journalists/news sites you would recommend who've written thoughtful pieces on Myalgic Encephalomyelitis for the general public?

In the past, I used to think this disease was just chronic persistent fatigue, but upon reading more I feel that as about as misleading as Iraq's weapons of mass destruction- another example where the media in general seemed to blindly parrot institutional power

llewellyn king is literally the only journalist who has ever given us our dues over the years although someone named stephanie land published a good piece in huffpo recently: http://www.huffingtonpost.com/-stephanie-land/chronic-fatigue-syndrome-_1_b_9513498.html

llewellyn's piece: http://cfsresearchcenter.org/index.php?option=com_k2&view=item&id=80:chronic-fatigue-syndrome-hidden-in-plain-sight&Itemid=435

as for the neglect my guess is a potent mixture of misogyny, professional laziness, "fiscally responsible" rightwingers eager to get us off welfare, and the underhanded work of a certain psychiatric cabal (simon wessely from britain has an especially bad rep within the community). ME/CFS came to light about the same time as AIDS, with all the same people making the decisions, and if you ever read The Band Plays On you should be aware of the massive resistance to doing anything for those sick and dying of the illness.

if you're feeling especially militant meadvocacy.org has some instructions for contacting your congressperson. we've been yelling at the NIH and CDC for ages now urging them to act, but they don't, and we think it's because there aren't enough of us (well enough to lobby congress anyway)! would appreciate some outside help.

What do you mean by being bedridden? Are you paralyzed?

great question! people with my illness suffer from a very severe form of fatigue that leaves us unable to carry out activities of daily living. it's not technically paralysis, although for the very severely ill, it can certainly feel that way.

Does that mean for the severe, they cannot turn over in bed or lift up their arm? Does their skin have sensation or is it numb?

i've heard anecdotes of very sick patients being unable to so much as lift a spoon and getting their nutrients thru a feeding tube. there's a young man named whitney dafoe who is very ill and has been living this way for years now.

a picture of whitney, https://scontent-lga3-1.xx.fbcdn.net/hphotos-xpt1/v/t1.0-9/12963940_860120144117059_4055772743451737093_n.jpg?oh=956293e36700212e13496ff84fb16cba&oe=57B47800 bearing a startling ressemblance to an AIDS skeleton.

i've also heard anecdotes of people having uncomfortable "crawling" sensations on their skin but my experience was of this awful, dull, insidious wholebody pain that never quite left me. people live this way for years and years and somehow manage not to commit suicide.

Have you seen the movie Chef?

nope, should i?

Yes, you should! And you'll never look at food the same way again :D

is this topical

No

i appreciate your useful and topical comments

thank you, that means a lot to me

have some cheeze with that

Do you work? Receive disability? How were you diagnosed? What do you think brought yours on? So many questions! I'm recovering from a bout of Epstein Barr and am soooo tired, so found your post interesting

great questions! living with ME is like having postviral mono except it never goes away, and if you go to see the doc they'll try to give you prozac and a "hysteria" dx.

there's also a significant subset of patients who develop ME/CFS following a severe case of mono, so definitely take care of yourself, you want to have this for months, not years!

i'm pretty sure it was mold exposure which brought mine on, but like many patients i was well, and then woke up the next day and i wasn't. my ebv IgGs are all messed up tho so i think it's likely i've also had mono for a decade. :0

I really can't work tho this is mostly due to the difficulty of finding a GP who is willing to accept your dx; if i could i might be protected by the ADA. as it is i am constantly getting fired, failed out of school and labelled "lazy, stupid". neither are true: i score 99th percentile on various standardized tests & did 100 hour weeks before falling ill with this crap. i'd say the disbelief is the hardest part.

How did you get diagnosed? There was a time in my 20's I thought I might have this. Turned out to be a variety of other things working together to make me worn out beyond belief all the time. But I had a friend with this diagnosis, who seemed to be for real. But when looking it up it seemed like there was really no test or official way to know, so I'm curious.

there are some tests but unfortunately your GP won't know to perform them.

your best bet, if you are really sick, is to become as educated on the topic as you can, and then prepare for all out warfare every time you enter the doc's office (with the added handicap of brainfog).

i got dx'ed "by accident" about six years in by a rheumatologist who wanted to get me out of his office. I never saw him again. most docs prefer to either ignore you or view you as a psych case.

regardless i had been so dramatically sick by this point that it was obvious that it was the docs who were incompetent and not i.

I'm so sick of incompetent doctors. I know they're really busy, but damn! I'm trying to figure out some other stuff right now with my female troubles (I'll spare you the details). I did my research and found a doctor who was supposed to be excellent. Waited for an appointment, took off of work to go, and they said she didn't have time, threw me off at a nurse practitioner who referred to a menstruating uterus as "fluffy," dismissed all of my concerns, and refused to explore what could be wrong. When I complained I was told that I had turned down further testing. Not true. So I took off AGAIN, came back to give bloodwork ('cause God forbid they just let me go to Quest to get it done on a day I'm off), and then they didn't call me with the results until I'd left them 20 messages.

female troubles

what's so offensive abt that? it's your health, gurl!

i'm no fan of lena dunham, but her essay on endometriosis rang true my own experience "all wimminz R hysterical liars". evidence-based medicine doesn't like empiricism after all, eh? if you have any ideas on how best to to wrangle with these fools i'd love to hear it. i've fired about 10 GPs at this point and i'm pretty happy with the one i have now, but it took WAY TOO LONG. wish there were some way to contest their claims on my insurance when they are not even providing treatment!

She was extremely patronizing, assumed I didn't know how menstruation works (I actually do), and explained it to me like I was 5 years old before refusing to listen to any of my concerns. I dealt with it by calling up and filing a long complaint with the secretary and demanding to speak to the actual doctor when she was available.

i feel like my problem is endemic to the medical system as a whole; finding someone who is willing to take your concerns seriously rather than constantly questioning you is the exception rather than the rule. i fire people left and right; why not.

So...what do you have?

a search engine on my top right browser pane, what abt u?

My girlfriend thinks she's been misdiagnosed with ME for the past 9 years. She's now getting treatment for the equally controversial chronic Lyme disease. We're beginning to think ME/CFS is just a label for misdiagnosed conditions with similar symptoms. What are your views on the existence of the illness as a whole? Have you been looking into Lyme at all?

The problem is that chronic (late disseminated) Lyme disease is a real thing with diagnostic criteria, but there are many many people walking around without it who have been convinced they have it, either by the internet, their friends, or one of the many quacks out there who have opened "chronic lyme clinics" to overmedicate people.

Shit, last year I had a patient referred to me for "chronic Lymes" (incidentally, saying "Lymes" instead of "Lymes" seems to have a nearly 100% positive correlation with quackery). Turns out they had systemic lymphoma, but had been treated with doxycycline, mefloquine, and some other entirely unhelpful medications for several years by a "chronic Lymes doctor."

hi, can we stay on topic please.

the reason docs can't diagnose neurolyme anymore is because in the early 90s, right before they started pushing that fake vaccine, a group of pharma reps and cdc staff changed the case definition, and i believe even removed a few bands from the western blot. as far as i can tell, a lot of patients are falling thru the cracks anymore.

my attitude is, "if there's evidence of infection of lyme, and patients are responding to doxycycline, keep them on the doxycycline". obviously use your best judgment when choosing medical protocol.

thanks for the question,

"chronic fatigue syndrome" is definitely a trashbag diagnosis; however a significant subset of these patients have Myaglic Encephalomyelitis, which is much more specific. see the ICC definition here: https://aqem.org/wp-content/uploads/2014/05/ICC.pdf

i've had many western blots for lyme over the years and i figure if i had it something would have shown. there's a lot of overlap for the conditions tho: they're both variations on what we know as AIDS.

what do you find enjoyable about life?

hope for a cure

Why does your community no longer use the name "chronic fatigue"?

ME is just the latest sexy name for "chronic fatigue", a bullshit name for people who really have depression but don't want to be told they have depression so doctors come up with a better name for it. It is absolutely not like having "late-stage cancer, advanced stage AIDS, or congestive heart failure" and anyone who pushes that nonsense is a fucking idiot. Study after study has found no infectious link, genetic link, or anything else to suggest this is a real disease. It's a great disease for drug seekers and hypochondriacs, though.

I'd be interested to know how you've come to be so certain that ME/CFS is a "bullshit" disease, when the medical community has been studying this for decades - and seems to have come to the opposite conclusion.

From my own perspective, I've seen this disease up close for almost a decade as it has destroyed the life of my best friend and wife. It's always easy to read about people with symptoms like ME/CFS that sound so innocuous- fatigue; who hasn't had that? Pain? I get headaches all the time... It's easy to just dismiss them out of hand as being a missed diagnosis of depression or some other disease. It's almost impossible to understand the extent to which bone-crushing fatigue and constant never-ending pain can affect your ability to function when they are with you every day.

And add to that the fact that your disability is hidden - everyone thinks you LOOK fine - and that some people think you are just making all this up! - it's a tough road for suffers of this disease.

So I guess I'd ask that you not be so quick to dismiss the suffering of others - everyone is fighting their own battles that aren't easy to understand from your perspective.

Unfortunately for you, medicine is about science, not feels. When someone comes in with "fatigue", there are literally dozens of tests we can run to help us narrow the differential. When all of these tests are normal, we can safely say that your fatigue is not... what's the PC word these days? oh yeah, "organic".

If you were someone trying to score free pain meds and disability, this is the ideal disease to claim to have. I've seen this many times before, and my only advice is to divorce your wife before she sucks you into her delusional state as well.

You mention 'dozens' of tests you can run. What tests are these please?

That's what a good history and physical exam are for. Do they complain about gaining weight and being constipated? Great, check their TSH for hypothyroidism. Do they mention chest pain? Get an ECG or a stress test to look for heart disease. Do they mention swelling in their legs or trouble breathing? An echo for heart failure. Do they mention weakness or numbness in a specific body part? Brain MRI to look for strokes. Any reason to think they may be losing blood? Check a complete blood count to see if they have anemia. Lots of infections? Test for HIV or Hep C. Peeing a lot and drinking a lot? A1C for diabetes. Fatigue that is most pronounced at the end of a day? Anti-AChR Titer. So on and so forth.

A healthy young person with completely normal everything? Probably not a real disease. Probably in their head.

I went through this for years with my doctor, although my symptom was dizziness upon standing. It got to the point where I could barely walk across the room to go to the bathroom. I became crazy depressed because I couldn't do anything and no one knew what was wrong. I had all kinds of tests, and my doctor eventually concluded it was psychosomatic. I knew it wasn't, so I pushed her for more referrals. After years of this nonsense a neurologist diagnosed me with orthostatic hypotension. With all these tests, no one had ever thought to take my blood pressure while I was standing up. Every time I stood up my blood pressure was dropping so low I was near passing out. If I had listened to the doctor who said it was in my head I'd be on disability by now. My point is, while there are certainly instances where it's all in somebody's head, there's also plenty of people who are written off with psychosomatic symptoms who have something very real going on, but since their egotistical doctor can't figure it out, they write them off.

I find this hard to believe, I see quite a bit of orthostatic hypotension as a cardiologist. But yes, I'm sure some small percentage of docs will miss this extremely common diagnosis.

won't even test for it, despite specifically reporting it.

even my (black, female) neurologist dismissed it. she really should've known better.

medical bias is real and strong and pervasive.

So would you check things like NK cell count? or CD counts?

No, unless you have a reason to suspect HIV (i.e. they are HIV+) or lymphoma/leukemias, those tests are pointless. But super expensive, so I'm sure you can find some quack to do it!

I think thats where you are going wrong. You are narrowing your focus too much. You wont find something if you dont look for it. A Paediatric Consultant in a national hospital has found all of these tests to be completely abnormal on my teenage son who is diagnosed with M.E. His H/S ratio is way too high meaning his immune system is in overdrive and the off switch isnt working. That's what ME is about btw. Its consistent with research findings by other specialists in the US btw, i.e. that the immune system burns itself out over a period of the first three years or so. Sadly not enough doctors are enlightened enough to test for these abnormalities because many just stop at the traditional tests and then tell very sick patients its 'all in their head'. Oh and btw his NK cell function is way low as well. The research is there if anyone wants to take the time to look. The problem is that the research numbers are relatively small (at least up to now - but trials are getting bigger) because money wasnt put into this area of research. Have you heard of Ampligen and the trials in the US? Have you heard of the Rituximab trials in Norway? Have you heart of the micriobiome research Prof Lipkin is carrying out on MEcfs patients in the US?

If you test for thousands of things, yes, simple probability says that some of these will be false positives and look interesting, which is why good doctors don't use this approach. I'm sure you'll find some quack who can order these for you to make $$$ while convincing you that it's all a neurologic disease. Ten years later, the fad will be that it's a microbiome disease, so another quack will convince you to send off your stool for a microRNA test for thousands of bacteria. Ten years after that, the fad will be that it's actually about hormone levels, so someone will test every hormone and its metabolite for you. Of course, all of these things are bullshit, because we can look at these people and see that there is nothing wrong.

Lipkin has 4 papers out about CFS in the past 5 years, which is pretty unimpressive, and it seems like all of them conclude "it has something to do with inflammation!" which everyone knows because you more or less need some kind of recent virus history to get "diagnosed" with this bullshit disease in the first place.

i can't see the HIV virus, does that mean it's not real? should i start having unprotected sex?

Probably in their head.

i'm not sure "in your head" happens as much as you think it does.

the problem i and many other patients have experienced is that docs don't know what to look for. when we set up proper studies with the correct patient subset and focused on finding biomedical (ie not psychological) evidence, they do find things.

careful of your own bias. too many stories of young women with serious diseases being dismissed until it's too late.

Hi,

I'm a sufferer, though not as severely as OP.

It is not bullshit, I can assure you. Without a diagnostic test for the condition, nor opulent funding it is not surprising people don't understand ME/CFS.

Cunts like yourself are not helping.

If you are a doctor, like you claim to be, may I suggest reading more on the subject? Perhaps Dr Charles Shepherd's 'Living With M.E. for a start.

And may I quote line 4 from your Hippocratic Oath:

"I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug."

Dude, I'm not prescribing you opioids for your imaginary illness, fuck off.

No, you are just turning away from people with a genuine illness. You even mock us.

You are an embarrassment to the medical profession, I can only hope you feel ashamed as you should do in years to come.

I wouldn't mock you if you had a real disease, like cancer or heart disease. I'm mocking you because you're a leech on society.

provide me with a cure, and i will happily cease to be a leech on society.

you may have to admit that my illness exists, first.

It's a shame you're being downvoted, but you're right. CFS/ME is really an extension of "fibromyalgia", which is essentially physical manifestations of clinical depression.

I have fibro and a crooked spine and do not have depression. Considering no one can say for sure what is the cause, it surprises me that you can say for sure what it absolutely is.

Since you're so knowledgeable, what should I do to cure it?

How were you diagnosed with fibro? Feel like I'm fighting a loosing battle with my body and my doctor!

I was diagnosed after testing for pretty much anything it could possibly be. It took about 5 years to get a diagnosis with multiple MRI's, examinations, and blood tests in the meantime.

Unfortunately Fibromyalgia is a diagnosis of exclusion. It's a diagnosis you get when you've exhausted all the other possibilities. This makes me think that it is possible that not everyone diagnosed with fibromyalgia actually has it and not something else. Especially those that are given the diagnosis early on without making the effort to make sure it is not something else.

Have you visited /r/fibromyalgia? It is a very accepting and supportive community and can answer any questions you have. Even if you don't have fibro, anyone would be welcome there

I've had every blood test ever pretty much :( but no other tests. I've only just heard a new doctor mention fibro although I've suspected that for ages. I've had chronic pain for as long as I can remember. Some doctors have said "it's general wear and tear" and some have just dismissed me. I haven't got arthritis and the only thing that came up on tests was A vitamin d deficiency. I don't want to be all woe is me but I'd like answers :) hope you're doing alright :)

there's a pressure point test which is somewhat subjective but still considered valid. if you're female defos consult with a lady doctor.

This is a common view, that it is all just the result of depression. It used to be that 80% of medical doctors used to agree. Now it is almost the inverse.

This statement is ridiculous for so many reasons. The two big ones being 1) stevewalton1234 offers no evidence (much like doctors who make similar statements) and 2) even if it were true, depression is a debilitating disease! Saying something is "just" a physical manifestation of depression exhibits a staggering lack of knowledge and thought about what depression is. Furthermore it shows a contempt for people who aren't exactly like yourself. Wake the fuck up asshole. Depression is as valid of a disease as cancer.

Absolute certainty about something not well understood is a sure sign of a closed minded simpleton. Whether intelligent or not, the person really needs to feel like everything fits into their worldview. The alternative is too scary. (Can you say pushy bible thumper or trump supporter?)

Do not let the stevewalton1234's of the world upset you if you suffer from this!!

I used to agree with Dr certainty. Then I awoke one beautiful spring morning, during one of my most content periods in life, feeling dizzy and weak. That morning was day one of a nightmare.

No one who knows me would believe that this is a depression driven malady. I am the most positive and buoyant person you will find. Nothing will ever keep me down. (Although, this affliction put me in a dark place from about the 6 month mark through the second year).

Stevewalton1234, you sound like the kind of idiot that thinks the bible is right because the bible says so. You are entitled to that opinion, but unless you've proven it scientifically, or lived it, then I reject you as being too simple to really get your brain around this.

It is good news indeed that I will likely never get to hear the good doctor "Steve" declare something like that in person. I would end up beating his fucking eyes shut and sacrificing my ability to help people with disabilities through my non-profit work. Sadly, the moment I read that comment, I'd have said "Fuckit" and done it anyway.

I am mostly better after six long years of relentless work and exceptionally clean living and determined effort. I realize I am one of the rare, lucky ones.

The trick? Don't believe anyone who says they know for sure what's going on, and don't let the fuckers get you down?

The medical profession is full of wonderful people. However, there is very little that we know, and very much that we don't know. The medical profession has a lot of people who are unable to say it when they don't know something. I think that is mostly because patients expect them to know.

Stevewalton1234: FTFY! I would welcome a response from you. I am well versed in this topic, and not afraid to debate another, be they ignorant or educated. IDGAF if you are head of medicine at Harvard, I will pull your fucking pants down. Bring it!

I'm not stevewalton, but I'll give my two cents: the problem isn't that we don't think depression is real, the problem is that when you tell me you don't want antidepressants and all you want is percocets/lortab/heroin, it's hard for me to take you seriously. Everybody has pain in their body, most of us don't come to the ER pretending to have a serious medical problem to score narcotics.

The fact that fibromyalgia is mostly a disease of middle class white women in America (and is pretty much unrecognized as a disease elsewhere in the world) tells you all you need to know about it. Same thing with yuppie flu.

ME/CFS and FM are so debilitating, that if you're anything but an upper/middle class person, you're not going to have the funds to wade thru all the crap docs and get appropriate treatment. this includes a dx.

i wish my illness responded to antidepressants. because then i would take them. but it doesn't. I was on these drugs for several years and had no relief in my symptoms. as a doctor, do you believe in empiricism? I do.

It's even more bullshit than fibromyalgia. Fibromyalgia we suspect has something to do with sexual trauma in childhood that leads to poor central gating of pain. CFS is mostly a way for "woe is me" types to score free disability.

cfs is bullshit. it's a stupid, unnecessarily vague "trashbag" diagnosis.

however you cannot deny that a large swathe of patients actually are indeed very sick.

i'd much rather work or do anything but lie in bed day after day. I worry all the time abt the future. I have a $600 monthly stipend from SS and i don't know if i'm going to have the same kind of support 10 years from now. i kind of hope i won't be alive in 10 years.

if you're so concerned about sexual abuse, are you supporting programs which prevent it? what have you done for the welfare of women and children recently?