Are you getting appropriate care from a doctor? (ME/CFS patients)

[redviper]

No, I've been sick with the disease for 3.5 years and I have never been under the care of a ME specialist or even anyone remotely close to that speciality. I live in Canada for what it's worth. I've made efforts to get in and see an ME specialist, but there are very few options and absurd wait times (+18 months)

 

[Sushi]

Also I made a mistake by not making sure the Unlimited Maximum Selectable Responses: were not turned off

What does this mean? I don't see any such poll options in editing.

I don't see it in editing either, but when you create a poll there is an option to allow unlimited responses.

Were you always able to travel with minimal recovery?

No, only after one level of treatment. I was very lucky to live in a city with an autonomic specialist and his treatment helped a lot. After that, I could travel.

Sushi

 

[WillowJ]

It would also be helpful to hear from those who have understanding local doctors, how they found them?

It's not very encouraging. It took me about 14 years of trying different doctors (and several different insurance plans, if that makes a difference), to find a competent understanding doctor (who knowing nothing of ME, was willing to manage my case as a serious patient, make referrals, and could manage comorbid and acute conditions deftly... and reason with my specialists when needed).

I don't know whether I finally got to the right clinic, or whether things had changed enough in my area by then, or both.

One thing that could have helped was going to the smaller satellite locations, out of the main area of town. Less ego and not as much politics? Since I lived closer to them when I started, this was easier travel anyway. (I don't drive myself)

 

[Snow Leopard]

I voted no. The reason is that there simply are no real specialists in this illness.

 

[oceiv]

My answer:I cannot access competent doctor and health care for anything (including issues that are not ME related) in my own country. i travel to a ME expert but It is causing financial issues and treatments are not supported in my own country.

My empathy and support goes out to you for being in a complete lack of local medical care reality. If I may ask, are local doctors just not willing to treat ME/CFS patients for anything or is the care for all patients (healthy and with other diseases) just not competent in your area?

While it's great that you have the option to travel to another country for treatment by an expert, it seems you brought up an important obstacle to getting regular care: no local support/coverage for an expert's treatment recommendations. In other diseases, an expert's recommendations would be taken seriously, local doctors would make sure to continue prescribing the effective treatments and those treatments would be covered by insurance. It's an important point that you made. If local support existed for ME/CFS-appropriate treatment, the treatment could be more regular. The financial issues are too prevalent amongst our patient population - sorry to hear they're a burden on you. You are really persevering in order to get just a portion of the care you deserve.

 

[oceiv]

I answers twice...I do have irregular treatment from an M.E specialist, but it is an 11 hour drive away in another country and takes a long time to recover from so I have not been able to travel as often as I would have liked. The treatment is also irregular because I haven't been able to tolerate most of the treatments so its been hard to get going with anything. I also have very irregular care from a local GP - although I wouldn't describe this as care or treatment. I go and see them or speak to a Dr on the phone if I absolutely have to, but they have never offered me anything for M.E or even for pain. They only ever look at my issues in isolation and its hard to get to see the same Dr so find myself explaining very complicated scenarios over and over again. I try and avoid them if at all possible.

I have a lot of trouble getting to the surgery - its only 3 miles away but I cant drive and there is no public transport - plus I cant self propel my own wheelchair. My husband takes me, but getting appointments to work around his job is very hard. Sometimes a neighbour takes me. I cant always go as often as I would need due to energy expenditure issues - especially as its usually a wait in the surgery for an hour at least everytime, sitting surrounded by people coughing and sneezing.

I have to say that all of these posts so far, prove that ME/CFS patients are the furthest thing from lazy! The lengths that you and others have gone to in order to get care are a testament to the human spirit to not just survive, but thrive. In my case and in other cases in which many patients have tried to get care, but haven't, the responsibility falls on the medical profession and the government entities who have too long ignored how sick we really are. Not the patients, themselves.

How do you manage through 11 hours of travel? Amazing. Are there some coping and comfort strategies you use to help you tolerate the trip? It can be indeed very difficult, with our medication and other sensitivities so heightened, to make quick progress or find the right treatments off-the-bat. Good point and I'm sure many others share this problem. It's great that despite all of these obstacles and more, you are managing to see someone who at least knows the appropriate treatments to try. I see (in your sig) that you're fundraising to afford these trips, as well - good luck.

It's terrible that your local care can't even manage the basic support and that there's little aside from personal support to get you there. Our Western medicine isn't properly attuned to chronic or multi-system diseases. In the U.S., if you are formally disabled, there are some transport systems available. But they aren't set up for an illness with such exhaustion and weakness as ours.

You brought up one of my previous biggest problems (when I was getting care) - going to the doctor puts you at great infection risk. If you're a patient with high infection susceptibility, how do you deal with it? Hand sanitizer isn't enough.

 

[Kati]

My empathy and support goes out to you for being in a complete lack of local medical care reality. If I may ask, are local doctors just not willing to treat ME/CFS patients for anything or is the care for all patients (healthy and with other diseases) just not competent in your area?

While it's great that you have the option to travel to another country for treatment by an expert, it seems you brought up an important obstacle to getting regular care: no local support/coverage for an expert's treatment recommendations. In other diseases, an expert's recommendations would be taken seriously, local doctors would make sure to continue prescribing the effective treatments and those treatments would be covered by insurance. It's an important point that you made. If local support existed for ME/CFS-appropriate treatment, the treatment could be more regular. The financial issues are too prevalent amongst our patient population - sorry to hear they're a burden on you. You are really persevering in order to get just a portion of the care you deserve.

i have many experiences of physicians who are not willing to investigate, or mainly write in the consultation letter that " for patients such as me, the last thing we should do is offering further testing therefore reinforcing that I have a physical illness." (You may have read that from other threads)- I was going in with CT scan showing a lesion on my ankle. Problems including abnormal imaging are downplayed and I am not believed because of the illness I have.

Even the supposedly specialized clinic is not willing to get serious and test patients, instead they are offering coping sessions, meditation and what not.

Letters of advocacy are left unanswered. It is all truly unbelievable, we are treated as second class citizens.

 

[oceiv]

No, I've been sick with the disease for 3.5 years and I have never been under the care of a ME specialist or even anyone remotely close to that speciality. I live in Canada for what it's worth. I've made efforts to get in and see an ME specialist, but there are very few options and absurd wait times (+18 months)

What a truly impossible situation, @redviper . Does this mean that you have no symptom control at all? An official diagnosis? People who do not know about how our illness gets treated would think that if you had to be sick in a country of your choice, Canada would be a good option. But for ME/CFS patients, the normal wisdom is turned upside-down. It seems too prevalent that the option left for patients is no care at all -shameful. I truly hope that your access situation improves.

Increasing the number of doctors willing to give well-suited treatments to ME/CFS patients would help. The big question is what is the best way to do so? For all patients' sake, I really hope we find a way to effect change on this front, soon.

I don't see it in editing either, but when you create a poll there is an option to allow unlimited responses.

No, only after one level of treatment. I was very lucky to live in a city with an autonomic specialist and his treatment helped a lot. After that, I could travel.

I just got info from wdb that there isn't a limit on poll respondents. Very relieved.

Your experience, the order in which you got treatment, could be very valuable to patients who are prevented from traveling because of autonomic symptoms. Thank you.

I know for many others there are multiple factors (pain, fatigue, PEM, money, etc).

 

[oceiv]

It's not very encouraging. It took me about 14 years of trying different doctors (and several different insurance plans, if that makes a difference), to find a competent understanding doctor (who knowing nothing of ME, was willing to manage my case as a serious patient, make referrals, and could manage comorbid and acute conditions deftly... and reason with my specialists when needed).

I don't know whether I finally got to the right clinic, or whether things had changed enough in my area by then, or both.

One thing that could have helped was going to the smaller satellite locations, out of the main area of town. Less ego and not as much politics? Since I lived closer to them when I started, this was easier travel anyway. (I don't drive myself)

I think your insights into which factors helped you in the ultimately successful search are beneficial for patients currently in a similar search to hear. People may have to switch insurance, if possible and seek out smaller clinics. I never thought of less centralized location even being a factor. Thank you. 14 years is a really long time to wait!

I voted no. The reason is that there simply are no real specialists in this illness.

Do you say this because so little of the etiology of the illness is known? Or something else?

When I was able to get to an expert, it was a big relief to be treated by someone who knew my symptoms and recognized my experience, right away. He knew the many variations the illness could take. It took away some of the exhausting explanation to which @justy referred. I've told parts or all of my story to so many doctors, clinicians and treatment professionals, I've lost count.


I've been meaning to link to this article on the history of one factor in how it became okay for doctors to reject patients who are "too sick." @SOC 's EBM situation reminded me of it. A quote:

One surgeon put it to me this way: ''Anything that makes you turn down a patient because surgery is too risky, that's a good thing. But turning someone down because they make your numbers look bad -- and it's the patient's last shot -- well, that's a bad thing, and that kind of thing is happening more and more.''

 

[alex3619]

I answered three times. I get irregular treatment from an ME doc, and I have limitations on getting to one, and Other. There are very few good treatments, even the best treatments don't work on everyone, and even where a treatment exists there may be regulation limitations on who can use it, or how much it costs, or how often you can do it. For example, quite a lot of testing is available in Australia, but to qualify for some tests you have to meet certain criteria. Now if there is a private clinic, and you can afford it, then its is sometimes available., but can cost thousands of dollars per test.

Until we have an effective and available diagnostic and evaluative tests, and effective treatments, things are always going to be dicey. The really good doctors can only see so many patients a year. If everyone could try to see them there would be five and ten and twenty year waiting lists.

The entire field is a mess.

 

[Raines]

I voted no I'm not able to get appropriate care form any dr

and also I'm getting irregular treatment from my local dr illness other factors limit number of visits


I voted no as the truth is I have never had any appropriate care (have any of us?) the tests I'd like to have are not available (wether its because the dr I'm asking doesn't see the point or because they are unavailable on the NHS too expensive or other reasons)

Like many others on this post, I'm more likely to get help with something (for example sleeping tablets, or a blood test) if I don't bring up the ME, just saying you have this disease shuts soo many doors instantly.

I also voted for getting irregular treatment from local dr, this conssits of yearly blood tests for my thirod issue, repeat prescriptions for the thirod medication and my antidepressents, and the occasional cream for my exzema. It is a huge chuck of enegy for me to go to my local gp and it only seems worth it if i really have to go.


I'm at the moment jumping through hoops to get to see the only NHS ME/CFS dr in the county, I have to get through several more rounds of forms and talks and assessments (including at least one with a psychiatrist!!) before I can even hope to see/talk to this Dr. also found out at the last meeting (which involved a group of us being talked at for over 2 hours (how is this appropriate for any of us with moderate ME??)) that this dr only works 1 day a week for the service - the whole of west sussex's ME/CFS NHS patients have only 1 specialist dr working only 1 day a week, and I can't expect to even get close to the possibility of seeing/talking to him for months yet.


Appropriate care on the NHS? - I don't believe there is such a thing for ME/CFS patients.

I'd like to be clear the NHS is an amazing thing, if I had something else I know I'd be well treated and cared for. I'm angry with how my disease is treated, they do amazing things for many others.

 

[daisybell]

I answered yes to treatment from a specialist.. That's only possible because I happen to live close to a doctor with a special interest. Treatment options are limited... The only useful thing I have been able to take is LDN. Interestingly I have been discharged from the public health system for both my other auto-immune conditions (endocrinology and rheumatology). My GP/PCP has told me that she wouldn't be prepared to prescribe the LDN for me,so if I can't see the local specialist I will lose that treatment option.
The lack of interest and support is rather mind-boggling. Basically I try to keep away from the doctors now. I think I may have found a supportive private endocrinologist for my thyroid issues.... The health system one was worse than useless and I believe his gung-ho approach actually did me a lot of harm.

 

[SOC]

It's important for patients to hear how you managed to travel, the strategies you used and how even your PEM has improved after regular treatment. May I ask how long it took to see such improvements?

That's a tricky question because improvements in different symptoms took vastly different amounts of time, and my improvement times were very different from my daughters'. My daughter had some improvement in her condition within 6 weeks of starting Valcyte. I didn't see much for 6 months. She was able to sit upright in the car longer as soon as she got some OI treatment. Since I didn't get OI treatment at that time, my ability to do the whole long car ride sitting upright took much longer -- maybe 8-9 months -- and was strictly the result of Valcyte, since that was all I was getting at the time.

Getting appropriate OI treatment made a big improvement in functionality for me. It didn't change my PEM, but I was able to do more because I could be upright more and walk around more without my BP and HR going nuts. Theoretically, any of us should be able to get OI treatment locally, but I imagine many of us have the same problem I did -- we don't have severe, classic POTS, so our local docs either don't recognize it or refuse to treat it as "not serious enough to warrant treatment". A lot they know.

My daughter went from nearly (probably should have been) housebound and heading downhill rapidly to about 90% functional in approximately 18 months. She takes a lot of treatments to stay there, naps more than most people her age, and is cautious about activity -- she doesn't do aerobic exercise, for example. She has done several continuous days of day-hiking a couple times a year for several years now. We don't think she gets PEM anymore, or if she does it's mild by our standards. She can tire more easily than others her age, so she may still have some exercise intolerance or effects from her OI. She is not cured, but is able to do most things people her age do.

I went from bedbound and unable to read a book to able to work full time from home and take care of all my ADL's including shopping without a wheelchair in about 5 and a half years. It came in fits and starts as my specialists tried different treatments. We just keep picking away at symptoms, giving me another 5% functionality here, another 10% there. The biggest was antivirals, though. Valcyte and Valtrex improved my condition by about 50% (from bedbound to mostly housebound) in 2-2.5 years. OI treatment after that gave me another 10-15%. Other things give me lesser improvements, but many little things add up. The biggest effect on PEM for me is from high-dose CoQ10 (1200-1800 mg daily). I was doing noticeably more within 6-8 weeks of starting the high dose.

My current specialist keeps picking away at my symptoms. She keeps an eye on my condition -- pathogens, immune changes, thyroid, OI, and so on -- and adjusts my medications/treatments as necessary. My condition does not stay stable at it's best level. I need regular management. I get new pathogens or reactivations of latent ones. My immune system is not good. My system changes as some things seem to be healing while others continue to deteriorate.

For me, it's not a question of seeing the specialist to get a one-off treatment and I'm done. I don't think ME is like that. We don't have a cure. There's no one magic fix-it treatment. Like a number of other chronic conditions, my ME needs on-going medical management to keep me functioning as best I can. Most of this is done by phone appointments and labs my specialist orders and I have done locally. Irregular treatment would not give me the on-going management I need to stay functioning at the level I do now.

As far a cost is concerned, I'm finding it to be cheaper and less physically demanding to travel by air to see my specialist once or twice a year than to try working with my local doctors. I wasted SO much money and energy seeing local cardiologists, endocrinologists, GPs, etc who charged me lots of money and did nothing for me. It was also physically and mentally exhausting to make trip after trip after trip and get nothing but insults. A well-planned trip by plane once a year turns out to be less physically demanding than repeated trips to local doctors.

My specialist costs no more than my local doctors and is covered by my insurance, so there's no extra cost there. Most of the labs are covered by insurance as well. The cost of the few labs that aren't covered is more than made up for by not paying local doctors over and over. In fact, last year my husband's medical expenses were higher than my daughter's or mine and he doesn't have ME!

Right now, the biggest out-of-pocket cost related to ME is supplements which are not covered by insurance. My specialist tries to avoid recommending those any more than necessary, but sometimes there isn't an insurance-covered medication that accomplishes the same thing. For example, I've been on and off low doses of Equilibrant. I'm better on it than off it, so I take it. My daughter's NK cell function stays normal with inosine, so it's worth paying for. I wouldn't be able to work full-time without CoQ10, so I choose to pay for it in order to be able to support myself. None of these supplements are cornerstones to my specialist's treatment plan. If I couldn't (or chose not to) afford them, she would do her best to find ways to help that I could afford.

All that said, ME/CFS specialist treatment is not a magical cure for me. It's a very, very delicate balancing act to keep all my symptoms under control sufficiently for me to have a rough semblance of normal life -- support myself (if not at the level I could pre-ME), take care of myself and my home (with definite limitations), and interact with my family and friends. If I don't keep up with all my treatments/management religiously, or if I catch something, it can all come crashing down. I don't fall back to long-term bedbound; I am past that. But not keeping up with my hydration protocol, missing medications (or some supplements), not staying within my (new) energy envelope, straying significantly from my diet, can be a disaster. I can't keep up with my work, am back in bed by mid-late afternoon, and need a wheelchair outside the home.

I'm grateful that my specialist is willing to work with me to tweak every little thing to allow me to walk this tightrope of relatively normal function, but I'm under no illusion that I've beaten ME or that I am free to do what healthy people do. I'm willing to perform this balancing act because I want to be able to think straight, support myself (after a fashion), and take care of my ADLs as much as possible. If this is what it takes to function as 'well' as I am now, I'll do it as long as I am able, but I'm not going to pretend it's easy or that I'm not aware every waking minute of the limitations ME imposes on my life.

 

[redviper]

What a truly impossible situation, @redviper . Does this mean that you have no symptom control at all? An official diagnosis? People who do not know about how our illness gets treated would think that if you had to be sick in a country of your choice, Canada would be a good option. But for ME/CFS patients, the normal wisdom is turned upside-down. It seems too prevalent that the option left for patients is no care at all -shameful. I truly hope that your access situation improves.

Increasing the number of doctors willing to give well-suited treatments to ME/CFS patients would help. The big question is what is the best way to do so? For all patients' sake, I really hope we find a way to effect change on this front, soon.

No, unfortunately I think some people have a mistaken perception of the Canadian health care system, it's brutal. There are massive funding shortages and wait lists, as the Canadian government desperately clings on to this cherished notion of public health care for everyone. I'm sure we will move to more of a European model of health care in the next decade, so (both public and private), so hopefully that will help improve the situation for Canadians with ME. I've also had to move provinces once which reset my wait times back to the beginning, but to live in a city of more than one million people and only have one CFS/ME specialist (currently not accepting new patients) is incredibly frustrating and I'm sure a lot of people in my region feel the same sort of helplessness in regards to treatment options.

 

[Apple]

I am 25 and have been sick (borderline housebound) since the age of 15. I have no help with my ME/CFS from any doctor. My GP accepts that I'm ill and supports benefit applications etc. But with regards to treatment just pretty much shrugs and tells me that my tests are normal, I should do more activity and I should try anti depressants 'because they will help all my symptoms'. My cardiologist was ridiculously dismissive. I have never seen a neuro, rheum, immunologist, or anyone else with an interest in this illness.

I ticked that 'I only get help for my non ME/CFS symptoms' but actually, most are interlinked and none of my symptoms are actually under control.

:|

I feel so incredibly let down by the NHS and every doctor that I've met. I am beyond envious of those who are able to travel to see specialists. You should count yourself very lucky.

 

[Sushi]

Your experience, the order in which you got treatment, could be very valuable to patients who are prevented from traveling because of autonomic symptoms. Thank you.

The only useful thing I have been able to take is LDN.

Yes, autonomic are a huge issue with traveling. And I also was prescribed LDN locally and this also made traveling much easier.

It's important for patients to hear how you managed to travel, the strategies you used

When I first traveled it meant a 17 hour flight to another country. I always use the airline wheelchair service, and credit card miles. When I traveled overseas I scheduled my arrival for several days before my appointment in order to have recovery time, and scheduled a saline IV after the big blood draw to ease the return flight. Now I am able to see the same specialist in my own country with just a 4 hour flight. For these trips I carry almost all my own food to avoid struggling with restaurant food and having to leave my hotel room in order to eat. In between face-to-face visits, I have phone consults.

For me, it's not a question of seeing the specialist to get a one-off treatment and I'm done. I don't think ME is like that. We don't have a cure. There's no one magic fix-it treatment. Like a number of other chronic conditions, my ME needs on-going medical management to keep me functioning as best I can.

Ditto, no cure but careful management of symptoms, and treating the ME manifestations in a sensible order really does help with functioning. My doc also keeps up with all the emerging research and is willing to try protocols whenever the risk/benefit ratio is in my favor.

Sushi

 

[TigerLilea]

I'd estimate that 80% of the time when I go to the doctor it is because of sinus issues. I don't even mention CFS anymore as I have yet to find a doctor around here who knows anything about it. I must admit though that I sometimes wonder if my sinus issues and CFS are one and the same?? I can't help but wonder some days if I was able to cure one if it would automatically cure the other.

 

[alex3619]

I'm sure we will move to more of a European model of health care in the next decade, so (both public and private), so hopefully that will help improve the situation for Canadians with ME

We have that in Australia, and it does open up options, but the wait lists can still be very long for the public system and specialist or surgical services.

 

[alex3619]

I must admit though that I sometimes wonder if my sinus issues and CFS are one and the same??

Huge numbers of ME patients have sinus issues. They are often unresponsive to standard treatments.

 

[WillowJ]

I'd estimate that 80% of the time when I go to the doctor it is because of sinus issues. I don't even mention CFS anymore as I have yet to find a doctor around here who knows anything about it. I must admit though that I sometimes wonder if my sinus issues and CFS are one and the same?? I can't help but wonder some days if I was able to cure one if it would automatically cure the other.

I did hear one anecdote from my sister's doc about one person who got sinus surgery and all their other autoimmune-type issues cleared up. I guess this is not common, though--I hear more stories like what @alex3619 said.