Is ME/CFS a Rich Man’s Disease?

[percyval577]

Patients from outbreaks recover to 52%, sporadic pwme recover to less than 5% (very probably due to genetics).

Additionally there are these up and downs.

To me it looks like an alldays influence. The core of the disease might actually be quite simple.


I personally don´t believe much in dcotors who are covering an unknown subject. Yeah, and you pay them.
If I would be rich I would preferre to donate my money.

 

[AngelM]

exactly. all the years I've been on this board, and others, I've never heard of him.

correct me if I've got this wrong, but I believe you're focused on shikman b/c your daughter is in san diego and you can stay w her for free AND shikman is in san diego??... Dr Chia is in Torrance (2 hrs from S.D.) so maybe it's time to investigating him as an option? I haven't been to him personally, but there are ppl on this board who have been to him, so maybe you can find them and ask for feedback. best of luck

Thank you. You are absolutely right. It is so expensive to travel, and I have spent many thousands of dollars over the years traveling to see a doctor whose advice was absolutely worthless—Well, it is dispiriting. At this point, having a place to go where somebody can pick me up at the airport, give me a bed for a night or two, makes the difference between my being able to see a CFS knowledgeable physician, or not. So I thank you for the information on Dr. Chia. BTW I have family in Boston, as well. I read about a clinic at Brigham and Womens that supports CFS. But unclear if it is just more Internet enticement—You can Google “CFS doctor’s near me” and fifty MDs will pop up and not one of them knows a thing about the disorder. But if anyone knows a doctor they could recommend within the Boston area, I would appreciate the info. Thanks to all.

 

[ebethc]

Thank you. You are absolutely right. It is so expensive to travel, and I have spent many thousands of dollars over the years traveling to see a doctor whose advice was absolutely worthless—Well, it is dispiriting. At this point, having a place to go where somebody can pick me up at the airport, give me a bed for a night or two, makes the difference between my being able to see a CFS knowledgeable physician, or not. So I thank you for the information on Dr. Chia. BTW I have family in Boston, as well. I read about a clinic at Brigham and Womens that supports CFS. But unclear if it is just more Internet enticement—You can Google “CFS doctor’s near me” and fifty MDs will pop up and not one of them knows a thing about the disorder. But if anyone knows a doctor they could recommend within the Boston area, I would appreciate the info. Thanks to all.

FWIW, I found my next doc this way:

- id'ed ppl on the board who had overlap w my symptoms
- found out who their docs were
- came up w a standard list of questions
- pm'ed them w the questions (high response rate, but I don't know what % it was)...
- based on responses, picked the doc for me

the reason that I did it this way is b/c CFS is such a broad, generic set of symptoms... IMO, it's more than one illness... The person I came up w is Dr Kaufman in Mountain View, CA... His associate Dr Chheda is supposed to be great, too... They work closely w the top researchers, so they're up on the latest research... Plus, they don't seem to have the "hammer/nail" approach, which was important to me... ie, have you heard the expression, If you have a hammer, everything looks like a nail? Well, IMO doctors can be extremely biased and have their "go to" diagnoses and protocols, which they cut & paste on every patient... I didn't want that person; I wanted the "Dr House" of immune illnesses.. ie the doctor who thinks broadly, creatively, out of the box and comes up a w custom protocol... The hammer/nail CFS doctors are not necessarily bad, you just have to have your eyes open... especially when you have a finite amount of money/energy - which is most CFS patients... hammer/nail doctors include

• Montoya @ Stanford (you will get an RX for anti-virals, b/c re-triggered EBV, HHV-6, CMV etc. are implicated in CFS... not necessarily wrong, just not at all complete.. oh, and you will see a physician's asst or nurse b/c montoya doesn't accept patients now that he's been published. last i checked, $925 for first appt. they take insurance)
• Chia in Torrance (focused on enteroviruses and gut... basically, same situation as montoya, except you will actually see chia, not an assistant and he will tell you kaufman is all wet b/c these guys can't imagine that they all have one piece of the puzzle and NONE of them has the perfect answer... like montoya, he's on to something, but it may or may not be a top problem for you plus he will likely not go beyond that solve a single problem approach... If you don't have bad gut problems, he's probably not for you, but this is why you should PM ppl who have actually seen him (which I haven't) and find out if he's going to go after something that's one of your core problems.
• e.g. ask ppl, On a scale from 1-10, where were you before you saw him and where are you now?

BTW I never saw Dr K b/c my great insurance ran out before I could see him...Oh, and you have to pay out of pocket for appointments, then get reimbursed from your own insurance company b/c Dr K has an independent clinic w/o administrative support of a big institution, like Stanford, etc.... rich woman's disease!

 

[lilwren]

I haven't seen anyone mention abuse. I have been doc shopping for 23 years and have suffered all of the above mentioned things PLUS being abused by quite a few doctors and their staff.

I waited for a year to go to the Mayo Clinic in Jacksonville, Florida. My husband, myself, and my dogs stayed in a hotel. The gate keeper doctor who gave me my initial consultation told me I couldn't get past him until he gave me a pelvic exam. No nurse present ... only my husband. I told him no, but after fifteen minutes of arguing he told me it was his way or the highway. When i got on the table he shoved his fingers into my vagina ... got a disgusted look on his face and told me "you should have told me you were on your period or at least taken out your tampon". I was wearing a fentanyl patch, taking lots of xanax, and was pretty doped up so had forgotten I had a tampon in. I told him to fuck off ... went and got dressed and left.

I've had nurses yell at me for wearing long sleeved sweaters which interfered with them taking my blood pressure. I've had techs put all their weight into trying to push the dye out of a syringe into my arm. I've begged doctors for help to have them tell me "you must be possessed ... you just need a good exorcist" and laugh in me and my husband's face. I had an acupuncturist tell me I must have been a serial killer in my past life to be so sick. I've been threatened with being Baker Acted because I flippantly said something about being better off dead. And on and on and on and on.

It's far more serious than anyone cares to admit. We are being used and abused and no one cares ... there is no one to speak up for us ... we are left at home alone to suffer and die!

I got sick with the ‘flu’ in 1995 and have been steadily getting worse since then. I was diagnosed with Multiple Sclerosis / Chronic Fatigue Syndrome in 2002. At that time I was treated for five herpes viruses with anti-virals, Fentanyl, Xanax, and Ambien.

I am home bound and some days bedridden. I have no treatment other than what I can buy online and try on my own. My last doctor told me I don’t have the money to find out what’s wrong with me … so I have no doctor. I haven’t found a doctor in central Florida that knows how to treat this, or even believes in it, so I struggle alone.

The first elimination diet I ever tried was in 1996. In 2004 I was diagnosed with Celiac Disease. Since then I have tried to connect the dots with relation to food and am still searching. I have severe reactions to just about every food. My current diet is limited to about four foods … just so I can function a tiny bit. It’s not ideal, but I have to work and function a little bit.

After 23 years I am still as sick as the first day in 1995 … some days I can’t walk or think and the lymph node pain is almost unbearable. If it weren’t for the help of forums like this I would most likely be dead. After 23 years I am still plodding along … still trying things to get some improvement in the quality of my life.

Currently I only take Ambien and Acyclovir … everything else I try is as natural as possible. The only pain relief I get is willow bark extract and Penetrex pain cream.

Thank you all for being here … there is no other place to turn except for forums like this! Bless you all for your contributions.

 

[Wolfcub]

I had to respond because, when I read your post, I had just been thinking about how “eating healthy” is impossible when you are too fatigued to get to the grocery store, much less prepare a bealthy, balanced meal. There are weeks when I live off the Dominoes menu, which offers limited options, but is pretty much all that is available where I live. But restaurant delivery is expensive no matter what you order—and those drivers deserve a nice tip because, like everybody else, they’re trying to make ends meet. I’m assuming when you say you pick up dinner where ever is easiest, it is because you, too, have run out of the energy it takes to shop, lug, and cook. I feel guilty every time I order food, rather than cook, but sometimes I don’t have a choice. I don’t even want to know how much money I’ve spent at Dominoes this month. I’m on a first name basis with all the drivers. I don’t know how many people can say that.

I always get online grocery deliveries here. All the grocery stores offer that service, and I pick a delivery slot which is the cheapest (usually late night, 10pm-11pm etc) It doesn't come to much extra cost. The delivery men are so nice, they would even bring my order inside if I asked them to, but I don't. I unload it in my hallway by the front door, and take things through to the kitchen at my leisure.
I know I'm not "severe" and can do those things and am grateful.

But for anyone online grocery deliveries are a great idea (so long as it's possible to get to the door, sign for the order, carry the things to the kitchen and put away.)

Sometimes I have better energy than other days, and can cook up a batch of (soups/stew/dhal/veg etc) to last a few days and put that in the freezer for times I have no energy and just getting a frozen block out of a freezer bag, dumping in a pan, and heating 5 mins is all I feel like doing. But at least I know it's healthy food and my preferred stuff.

 

[AngelM]

Thanks @Wolfcub. I have actually started using grocery delivery. It is more affordable than it was even a few months ago. I agree that the “shoppers” are delightful. One young man even offered to take my trash out for me. Unfortunately, lately my bad days have outnumbered my good days. Hoping to get that turned around.

 

[AngelM]

@lilwren, I cant help but think that, even though ME/CFS has been accepted as genuine illness by NIH and most health agencies across the globe, it has actually become more, not less, difficult to find proper medical treatment and knowledgeable doctors than it was 20 years ago. It baffles me that while illnesses like Multiple Sclerosis and Myasthenia Gravis are just as impossible to definitively diagnosis as ME/CFIDS, victims of those disorders are never dismissed as malingerers or lunatics. In fact, foundations for MS and MG research is well-funded, while ME/CFS slogs along, begging for every research dollar it can get.

My experience over the past year is that the highly-touted ME/CFIDS doctors (as well as, MAs, PAs, and NPs) are private pay only. Even a half hour telephone call with one of these “docs in demand” is $300 or more—paid in advance. I understand the point that some forum members have made that ME/CFIDS is a complex illness and, therefore, requires more of a doctor’s time and attention. But I was diagnosed more than twenty years ago by an infectious disease specialist who accepted my insurance and didn’t count down the minutes of my visits. I never heard him complain. I think that is called “dedication.” He even used his own time to hold semi annual CFS conferences to provide hope for ME/CFS patients and families by updating us on current research findings, as well as, explaining possible future treatment protocols.

ME/CFIDS destroys lives in ways that people with other chronic illnesses can’t imagine. Abuse is certainly a part of that ongoing destruction. We all have horror stories that are eerily similar. I can’t count on an abacus the number of times I’ve been humiliated by a doctor, dismissed as being mentally ill, ignored, disrespected, and laughed at. The worse part of the abuse for me is that over the years the abuse has usually taken place behind my back, but in front of my family—husband, children—who have been all too eager to agree with the man with the MD behind his name. As a result, I have given up looking to my family for emotional support during times when my symptoms are particularly debilitating—They have been convinced by doctors over the years that to believe my illness is real is to “enable” me. God forbid that we be comforted, given an encouraging word, or occasional helping hand. Better to ignore the possibility that our pain is real. Believe me, I’ve experienced enough “eyerolling” over the last thirty-plus years to last two lifetimes.

I am also wondering if abuse doesn’t include supplement companies. Supplements are now more expensive than prescription drugs. Every day a new cure in a bottle is introduced on the internet or social media. Put a new label on NAG, design a colorful label, run a few well-placed ads, and suddenly you can’t ship the stuff out fast enough! Currently, have a medicine cabinet filled with so many miracle cures that I can no longer keep track of which supplement is which—much less what each of them is for. Seriously, there are not enough hours in my day to take them all—even if I wanted to. I cringe when I think how much money I’ve wasted looking for that magic bullet. Interesting that so many supplement companies have jumped on the ME/CFS bandwagon, while pharmaceutical companies continue to pretend that the disorder doesn’t exist.

One more thing before I put my whine-fest to bed. You mention the swollen lymph nodes. They are real. We do not imagine them. Nor do we summon up low grade fevers and sore throats and the other very “measurable” symptoms we share. So how can ME/CFS be “all in our heads?” Since when did swollen lymph nodes indicate a “mental” illness? I’ve quit looking for answers.

 

[Hufsamor]

I always get online grocery deliveries here.

My husband do the grocery, but I order online for my mother.
And for her, we always buys dinner for her to put in the microwave.
(Difficult if you have several allergies, but easy to "make" and cheaper than many other options)

 

[Wolfcub]

My husband do the grocery, but I order online for my mother.
And for her, we always buys dinner for her to put in the microwave.
(Difficult if you have several allergies, but easy to "make" and cheaper than many other options)

In England we also have a company that delivers frozen dinners complete with puddings if wanted! The dinners are quite wholesome-looking. They are all traditional fare and wouldn't suit vegans/vegetarians**, but great like you say if there aren't any food allergies. And they are great value. Those who buy them say they are quite tasty. They are all easy to do in a microwave and will even work in an oven I think. For a whole week, the cost would add up to the average grocery bill anyway for one person, so it's not expensive.
The company is called "Wiltshire Farm Foods" I think. I believe the delivery people will even put them in the freezer for you if required. They are used to delivering to old frail people so are accustomed to more physically unwell people needing some help.

For anyone in UK I just found their website:
https://www.wiltshirefarmfoods.com/...NpPTNOAH7-aqxytFCkHa_Zn_zznTd968aAukZEALw_wcB

I see they do gluten free too
**I take that back. I see they have 2 veggie option pages

 

[scisolver]

You may want to look for a dysautonomia specialist instead of just ME/CFS.

As far as being a state resident, who know. Obviously it is easier for people who are in state to make return visits long term.

 

[minimus]

I don't think ME/CFS is a rich man's disease, but comprehensive diagnosis and reasonably effective treatment seem to require stellar health insurance and/or considerable financial resources. Absent those, you need to be willing to spend yourself into poverty. The problem is far worse in other countries, I think.

For this reason among others, many ME/CFS patients never receive a diagnosis because of their financial constraints, making it a "rich man's diagnosis". (In the US, the median income of African Americans is 40% lower than for whites. In my two decades of illness, I have seen multiple ME/CFS specialists and have only once seen an African American patient in one of their waiting rooms.)

There is a self-reinforcing negative feedback loop that results in expensive care for those that can afford it and inaccessible care for those who cannot:

• Step 1: A decades-long period of grossly inadequate government-provided research funding prevents the development of a robust body of legitimizing, cohesive scientific research or of diagnostic markers. The shoddy and biased PACE studies partially fill the void, further undermining the willingness of governments to invest in good biomedical research.

• Step 2: ME/CFS patients, lacking treatment, are too disabled to mount effective protests or campaigns to raise government research funding. Because the disease is not thought to be common, fatal or infectious (and because of the insinuations that it may be psychosomatic in nature), healthy family members, friends, and community members are unmotivated to take up the cause of protest (in contrast to the AIDS crisis in the 1980s.)

• Step 4: Mainstream medicine views ME/CFS skeptically because of the lack of a robust body of scientific research.

• Step 5: Only a small number of "renegade" doctors choose to specialize in ME/CFS for two reasons. First, their professional reputations can suffer from choosing to focus on it. Second, they are paid less in the form of insurance reimbursement than other specialists because their procedure codes (office consults, phone consults, test prescriptions, medication prescriptions) tend to be time consuming but relatively non-lucrative in comparison to routine diagnostic procedures performed by specialists in other areas of medicine.

• Step 6: The small and dwindling number of ME/CFS specialists are overwhelmed with demand from a large patient population. (At this point, I would guess there are fewer than a dozen ME/CFS specialists in the United States). These specialists then ration care. Some close their practices to new patients (Peterson, Bateman until recently), and a few do so by limiting the time they allocate to each patient. But the more common way to ration care is to charge higher fees. To secure a price-insensitive patient roster, some ME/CFS specialists locate their practices near areas of extreme economic wealth like Silicon Valley and South San Francisco (e.g. Kogelnik, Kaufman, Eric Gordon). To the best of my knowledge, there are few if any ME/CFS specialists left in "rust belt" states or the deep south.

Of course, this describes the situation in the US. It is far worse in many other countries, where national health insurance may not reimburse at all for ME/CFS specialization.

Unfortunately, I don't see this dynamic changing any time soon. While the OMF and SMCI are doing or funding great research, they are still working on shoestring budgets. The NIH still allocates little to ME/CFS research. And my personal experience, as a white middle-aged male, is that mainstream medicine is no closer to recognizing ME/CFS as a distinct disease with potentially severe symptoms today than it was 20 years ago, when I first got sick. If anything, my experience with specialists at major teaching hospitals in New York -- Weill Cornell, Columbia Presbyterian, NYU Langone -- in recent years has been highly discouraging. None of them acknowledge ME/CFS, they don't discuss it, and they certainly don't treat it.

The one glimmer of hope I have is that a renowned scientist like Ron Davis acts like a "node", attracting other scientific "nodes" to this neglected field of research. If his notoriety can attract world-renowned experts to this field of research, maybe a substantial, cohesive body of research will build quickly. My hope is that this will cause a change of heart within the medical establishment, causing more doctors to specialize in ME/CFS. The involvement of Ron Tompkins and David Systrom at Harvard gives me some hope on this front. But for someone like me, who has been sick for 20 years and is now in his 50s, I think time is running out.

 

[Stretched]

Those past age 65 are really in a bind due to forced Medicare for insurance which most established doctors sidestep to get better
pay elsewhere or from younger patients. There really ought to be a law closing this escape hatch for doctors when the populace is responsible for their training in the first place then forced to use this insurance at retirement age. You’ll get there soon enough. Send a letter to your senator and Congress person!

 

[Doubletrouble]

Has anyone had any luck with an HPA axis Imbalance practitioner?

 

[gbells]

You won't.

I'm 35 years in, and have spent an ungodly amount of my own money on doctors who were all sure they had the answer. None of them did. There weren't any refunds. I've been done with chasing illusions for more than a decade now. I'm no worse without specialist care than I was with.

I'm skeptical when any doctor holds themselves out as a CFS specialist, at some ungodly price, when it isn't even known what CFS is. I think a lot, maybe most, of the treatments being offered are just nonsense, or playing Russian roulette with pharmaceuticals. I'd like to see some published results, however informal or small, validating the success rate by CFS specialists. There aren't any. Why not? It isn't that difficult to do a small informal study and make the results public.

I can't tell you what to do, but I'm going to hang on until someone actually figures out what this is, perhaps even for a treatment that has passed the muster of a blinded study. Fortunately, there are people now working in that direction in ways that were non existent for decades.

I agree with you. The CFS "specialists" I saw basically were integrative MDs who were disillusioned by medicine and tried various fads and one size fits all treatments to see if one would stick. This included yeast treatment, anti-viral herb tinctures, pulsed anti-biotics, olmesartan, valgancyclovir, D-ribose, and on and on. They were happy to take my money but had no interest in researching some new treatment unless I was willing to pay them $200 per hour on top of their usual fees.

As of today, ten years later, they have made no progress curing this disease and have virtually no idea what the disease mechanism is. If you have viral infections they aren't allowed to keep you on drugs indefinitely and it isn't a cure. If you have bacterial infections a regular doctor should be able to clear them out with antibiotics. Aside from that, you're looking at palliative care. Gabapentin for nerve pain, stacked ibuprofen/tylenol for inflammatory pain (bioavailable curcumin helps here), spoons energy counseling and treatment for depression to help you cope in the new disabled role. Save your money, you'll probably need it to live.

If you want to look at popular palliative supplements check out https://www.prohealth.com/me-cfs.