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

[oceiv]

I continue to use alternative medicine and continue to improve, in spite of setbacks. It has not avoided the time factor bringing in new symptoms, but relief has been relatively quick for the new twists in the tale. I hope to regain normalcy and full health as the years go by. This developed gradually. I think it can fade gradually.

Hi @GracieJ Wonderful that you were able to find and continue to have such dramatic relief and improvement. If you feel comfortable sharing which modalities helped you, it might be of help to others. I hope your health successes continue.

 

[barbc56]

What horrific situations so many here have been through. It's heartbreaking.

All in all, I have been very very, knock on wood, fortunate to have relatively good medical care, even with a few bumps along the way. That's the short version.

I checked, Yes. I'm getting regular treatment from a doctor, not an ME/CFS expert, but I'm not sure if that's technically correct.

I live in the states and though I originally had a diagnosis of CFS and Fibromyalgia, it turned out it was only with the first doctor I saw after getting sick. When I moved, I had to switch doctors and until several years later, didn’t realize the CFS had been dropped but the Fibromyalgia diagnosis remained. This reflects the fact that at the time CFS was rarely used as a diagnosis. In some ways, but only some, I think it's worked to my advantage.

This is my present situation. I have a PCP who sees a lot of FM patients and she's very knowledgeable about FM and it's comordid conditions. I also see a neurologist for the FM, pain management as well as sleep related issues.

So I'm not sure if the fact that my neurologist specializes in FM and Sleep Medicine really counts as a true me/cfs specialist in the strict sense of the word compared to others such as Dr. Klimas. That's why I chose the above answer.

I can change my answer if necessary.

Barb

 

[MeSci]

Your experience with the ACE inhibitor sounds seriously frightening. Were these mistakes and dismissal of your input wrt your ME/CFS and/or other conditions? Current doctor education and training discourage knowledgeable patients participating in their treatment course. Too often, doctors make a negative judgments on such informed patients, ones who research their conditions and come with ideas. CNN's medical reporter, Elizabeth Cohen, did a series of reports on being an empowered patient and pushing back on doctors who resist. The initial spark for her series and book was an experience with her daughter and how she, even as a doctor, was treated when she pushed back. She wrote about how important it was for her to advocate until her daughter got the right care. She was treated much like you, even with her being a doctor. Eventually, medicine will have to change in order to respond to the reality of most patients doing at least some research online. Finding an open-minded doc is really a treasure. I had one (a specialist for a co-morbid condition) for a while. She moved, unfortunately.

In ME/CFS, most of us are more informed than local doctors, which leaves them and us in an all too awkward position.

Unfortunately, even the best systems have medical errors and as always, we as patients have to remain vigilant. We need to be our own advocates, despite doctor objections. There have been governmental payment structure changes here to help reduce errors and things like hospital-caused infections. There is always room for more improvement.

The mistakes have been due to non-ME-related things generally, although it's possible that my tendency to excessive salt excretion (probably lifelong) and my hypertension do have some relationship with ME.

The only experiences I have had with doctors relating explicitly to ME/CFS have been when I finally forced a diagnosis out of a GP (PCP) after being ill for 4 years, a later referral to a specialist - 13 years after becoming ill - by another GP, who was otherwise appalling, and the appointment with the specialist, who concluded that I was already managing my illness well.

Whilst I was indeed managing it well in light of what I knew about ME, I didn't know as much as I know now, such as proper pacing, diet and supplements. It was through ME forums that I got that crucial info and was able to improve numerous symptoms, some of which I had suffered from for decades. By then it was 2012, and I had been ill for 17 years. I wish I had known about these interventions in the early stages.

I avoid discussing ME with doctors after trying a few times and getting those ominous blank looks from them, and they never bring the subject up. It's as though it doesn't exist - the elephant in the room.

The experience you have referred to about doctors even dismissing input from fellow doctors who have found themselves in the inferior, powerless position of patient crops up here from time to time. This research scientist had a similar experience.

As I said in another thread,

The UK's NHS Constitution, downloadable from here, says for example:

Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment.

You have the right to be involved in discussions and decisions about your health and care, including your end of life care, and to be given information to enable you to do this.

The NHS also commits

• to work in partnership with you, your family, carers and representatives
• to involve you in discussions about planning your care and to offer you a written record of what is agreed if you want one (pledge);
• to encourage and welcome feedback on your health and care experiences and use this to improve services (pledge).

 

[oceiv]

@barbc56 Quick answer. Your answer would depend on if the two doctors are giving you appropriate treatment for your ME/CFS symptoms as well as your Fibro. Are your docs managing your fatigue or other ME/CFS-specific symptoms? Are they giving you B-12 spray or shots or some other ME/CFS treatment? If not, I would pick: "Yes and No. I'm getting regular treatment for my co-morbid conditions, but not my ME/CFS." This answer was what my local care was for a long time.

 

[oceiv]

I have been lucky to have a GP whose attitude to ME/CFS at least has not been negative and hostile - mostly due to an NHS specialist moving to our area a few years before I was diagnosed (by him). He seems to have transformed some attitudes in the county at least, but he has now retired sadly as he was an immunologist and was willing for me to try Immunovir.

Unfortunately since ME/CFS treatment in the UK is rigidly 'treated' via the NICE guidelines this means nothing other than treating the symptoms and certainly not looking at biomedical causes. Early on I had tests done via Dr Myhill, and my GP was not willing to let me have magnesium or B12 injections on the NHS but was willing for a nurse to teach me to inject myself, and also lets me use the practice blood taking service for free if I have private blood tests elsewhere.

The GP also went out of her way to enable me to see an endocrinologist of my choice who allowed me to use T3 (I was already on thyroid meds), and that alone is unusual especially as I am on T3 only now which is expensive. Also though i visit her rarely she is always happy to refer me if it's within her power to whoever I may need.

I have had some fantastic treatment on the NHS for a serious eye condition which would have taken the sight of one eye without the operation I had, and also a subsequent cataract op. However chronic health issues are less well understood or supported, and these can drastically affect people's quality of life. And as has been mentioned, the NHS don't always get it right, and I have heard of cases where they got it badly wrong.

Sorry to hear that you've lost the one good specialist to retirement. How did Immuonovir work for you? Have you then lost the Immunovir, without him? This is the trouble with having limited docs for ME/CFS. If they move or retire, there is no one to replace them. I had a great practitioner for one of my co-morbid conditions. She was up on all of the latest treatments, would always suggest new things and was willing to write prescriptions for what would help me. Although she didn't treat ME/CFS, she helped my other symptoms and sleep tremendously. Since she moved, there's been no one who could adequately take her place. Might I ask how the specialist changed attitudes, since this type of step is a crucial one towards getting more of us care?

It's a relief that there is a workaround for you getting the shots and blood-work you need, but like many of us, you have to go to extra lengths and/or not get these things covered by insurance. ME/CFS patients aren't all made of money, unfortunately.

Even though the GP isn't 100%, I'm happy for you that her attitude is good - it makes a big difference in treatment - and that she's been able to get you at least some care. Here's wishing that you will continue to get that care and then will additionally get the rest of your ME/CFS, soon. Also what a relief that you kept your vision! Having insurance matters. Slowly, slowly the medical field will hopefully attune itself more to the many chronic conditions. Until then...

 

[oceiv]

When I was better than I am now, I traveled to see a specialist. I went with my carer, and we got a good deal on a hotel room with a mini-kitchen. She shopped (there was a Trader Joe's in the area), and I ate in the room. It wasn't chicken soup, but it was safe and I got by for a few days.

In days gone by (when I was better still) I used to travel with my lunch in a cooler, but that was before 9/11 and I don't think coolers are allowed now.

Very useful contribution for how to travel with ME/CFS. I used to do some of the same things, when I was better. Looking up where the Whole Foods (expensive, but has the right foods) and local health food stores were, prior to travel helped too. I don't know if rules have changed since I last traveled, but buses and trains did then still let people pack food coolers.

How do patients pack foods without coolers for plane travel, now?

 

[barbc56]

Are your docs managing your fatigue or other ME/CFS-specific symptoms

Yes.

Are they giving you B-12 spray or shots or some other ME/CFS treatment

I had b12 shots when deficient but they did nothing. My B12 is normal, so I don't take it. Are you talking about taking b12 even with normal levels? To me that would fall under alternative and not science based therapies.

Which brings up another question. I'm not sure what you mean by me/seid experts. Maybe that should be who as a lot of so called "experts" IMHO, are in the eye of the beholder. So to me there might be someone who isn't an expert whereas others may think differently.

At the moment, I can only think of the OMI, Standford and Klimas but have to admit I am not familiar with all her therapies. I'm sure there must be others that for the moment I'm forgetting. that don't are others.

Sorry, I have a feeling I'm making this much more complicated than it is.

Barb

 

[mermaid]

Sorry to hear that you've lost the one good specialist to retirement. How did Immuonovir work for you? Have you then lost the Immunovir, without him? This is the trouble with having limited docs for ME/CFS. If they move or retire, there is no one to replace them. I had a great practitioner for one of my co-morbid conditions. She was up on all of the latest treatments, would always suggest new things and was willing to write prescriptions for what would help me. Although she didn't treat ME/CFS, she helped my other symptoms and sleep tremendously. Since she moved, there's been no one who could adequately take her place. Might I ask how the specialist changed attitudes, since this type of step is a crucial one towards getting more of us care?

It's a relief that there is a workaround for you getting the shots and blood-work you need, but like many of us, you have to go to extra lengths and/or not get these things covered by insurance. ME/CFS patients aren't all made of money, unfortunately.

Even though the GP isn't 100%, I'm happy for you that her attitude is good - it makes a big difference in treatment - and that she's been able to get you at least some care. Here's wishing that you will continue to get that care and then will additionally get the rest of your ME/CFS, soon. Also what a relief that you kept your vision! Having insurance matters. Slowly, slowly the medical field will hopefully attune itself more to the many chronic conditions. Until then...

Apologies I don't know how to type into the quote - if I do will it keep the quote separate, or will my bit end up merged in with it? Anyway, I will type at the bottom for this one.....

Unfortunately the specialist only sent me one prescription for the Immunovir and then retired. I took it for around 6 weeks with no change either way, and then suddenly got a virus (ironic) that gave me vertigo. I had never had it before and was rather scared and thought it might be linked with the Immunovir so stopped taking it. Thinking now, I should have gone to my GP and showed her the specialist's letter and tried to get it from her, but at the time I went off on another tack - trying Low Dose Naltrexone, but that's another failed experiment. Anyway, my immune system has improved a lot since that point, through trying other methods (principally herbal treatment and getting adrenal support).

With regard to the change in attitudes, it may only be a small point, but from what I can see at the time, much of the medical profession in our county would have been very dubious about the reality of ME/CFS as a physical condition. I know that this specialist used to give talks around the county and was known to the GPs for referrals, and they would have learnt a bit more via him than they knew before.

Even so, though he was an immunologist he would have been bound by (and even contributed to) our UK NICE guidelines on CFS, so 'treatment' was limited to GET or CBT, but I was never offered either actually and would have refused them. However it was obvious he personally did think outside the box to some extent, given that he was willing to trial Immunovir, and also he had done some research on cytokines apparently. Unfortunately I only found out about the Immunovir from someone else, and wrote to him about it. Maybe he kept it under the radar somewhat.

His biggest help for me was to write fantastically supportive letters to help me get on and stay on disability benefits so that I didn't need to go back to work when I had a relapse. Luckily I am retired now, but we don't have health insurance as such in the UK - we get free medical treatment from our National Health Service, which can be very good for some conditions, but awful for others (ie especially chronic ones).

All doctors here are limited too in what help they can give by the bigger picture above them ie some things have to be referred upwards, and things that would be routine in other countries like having an FT3 blood test for the thyroid are not always possible now, and have to be done privately. Also getting any other thyroid treatment other than Thyroxine is getting very difficult too though I have been luckier with that one than most due to my supportive GP.

 

[MeSci]

Yes.

I had b12 shots when deficient but they did nothing. My B12 is normal, so I don't take it. Are you talking about taking b12 even with normal levels? To me that would fall under alternative and not science based therapies.

Why would it fall into an 'alternative' category if one were not deficient? Pharmaceutical drugs aren't given because we are deficient in them.

Personally I reject the terms 'alternative', 'complementary' and 'conventional' with regard to treatments. It implies that the norm is pharmaceutical drugs or surgery, when these - pharmaceutical drugs at least - are relative newcomers to medicine, and have often been found to be inferior to natural (my preferred term) compounds.

 

[MeSci]

Apologies I don't know how to type into the quote - if I do will it keep the quote separate, or will my bit end up merged in with it? Anyway, I will type at the bottom for this one.....

Unfortunately the specialist only sent me one prescription for the Immunovir and then retired. I took it for around 6 weeks with no change either way, and then suddenly got a virus (ironic) that gave me vertigo. I had never had it before and was rather scared and thought it might be linked with the Immunovir so stopped taking it. Thinking now, I should have gone to my GP and showed her the specialist's letter and tried to get it from her, but at the time I went off on another tack - trying Low Dose Naltrexone, but that's another failed experiment. Anyway, my immune system has improved a lot since that point, through trying other methods (principally herbal treatment and getting adrenal support).

With regard to the change in attitudes, it may only be a small point, but from what I can see at the time, much of the medical profession in our county would have been very dubious about the reality of ME/CFS as a physical condition. I know that this specialist used to give talks around the county and was known to the GPs for referrals, and they would have learnt a bit more via him than they knew before.

Even so, though he was an immunologist he would have been bound by (and even contributed to) our UK NICE guidelines on CFS, so 'treatment' was limited to GET or CBT, but I was never offered either actually and would have refused them. However it was obvious he personally did think outside the box to some extent, given that he was willing to trial Immunovir, and also he had done some research on cytokines apparently. Unfortunately I only found out about the Immunovir from someone else, and wrote to him about it. Maybe he kept it under the radar somewhat.

His biggest help for me was to write fantastically supportive letters to help me get on and stay on disability benefits so that I didn't need to go back to work when I had a relapse. Luckily I am retired now, but we don't have health insurance as such in the UK - we get free medical treatment from our National Health Service, which can be very good for some conditions, but awful for others (ie especially chronic ones).

All doctors here are limited too in what help they can give by the bigger picture above them ie some things have to be referred upwards, and things that would be routine in other countries like having an FT3 blood test for the thyroid are not always possible now, and have to be done privately. Also getting any other thyroid treatment other than Thyroxine is getting very difficult too though I have been luckier with that one than most due to my supportive GP.

That's interesting. There are at least 2 other UK doctors who appear to be knowledgeable about ME, but they are heading clinics that offer the usual rubbish, and it seems difficult or impossible to actually see the knowledgeable doctors.

Very strange really.

 

[mermaid]

Well I suppose the NHS system militates against you seeing the 'right' doctor as if outside your area presumably the Clinical Commissioning Group would have a say in it wouldn't they as they fund it? We were lucky to have Prof Pinching here in our county for a while, though people I encountered on ME forums were generally rude about him because he was also part of the 'system' that brought in the dreadful NICE guideline. I saw him face to face once a year for 3 years before he retired.

 

[MeSci]

Well I suppose the NHS system militates against you seeing the 'right' doctor as if outside your area presumably the Clinical Commissioning Group would have a say in it wouldn't they as they fund it? We were lucky to have Prof Pinching here in our county for a while, though people I encountered on ME forums were generally rude about him because he was also part of the 'system' that brought in the dreadful NICE guideline. I saw him face to face once a year for 3 years before he retired.

I saw him once and liked him, but he appeared sceptical about my chemical sensitivity, although he didn't say so explicitly. He is the specialist I referred to in message 83.

You did well to get what you did out of him. I suspect that most people just got offered the CBT/GET, even if Pinching himself might not have believed in it. I'm not sure that it's anything to do with whether a doc is in one's area or not - their hands appear to be tied as to what they can offer unless you manage to get round the NHS stranglehold somehow.

Pinching was formerly a pioneering specialist in AIDS. Imagine if he had headed an AIDS clinic where all that was on offer was CBT/GET...

 

[mermaid]

Oh sorry @MeSci I seemed to have missed your comment above until you pointed it out.

Yes, it's true that Prof P wasn't much help for me really other than being willing to prescribe for my migraine aura,and for sleep if I needed it (have never had a real problem with that unusually). At the start I was working part time, and less affected than later when I had a relapse. I was however at that time under enormous strain due to family issues so he was very empathetic and supportive over those, if not able/willing to offer anything to help with the ME/CFS. He encouraged me to change my hours of work and I was able to use his support in negotiating a change with my employer before I relapsed.

I did discuss going to Dr Sarah Myhill for help, with him, and he was very sceptical about her approach generally and would not sanction the NHS using B12 and magnesium injections to see if they would help me. I did it privately and in my case I don't think they made any real difference, but I know they do help some people. However her dietary approach did help me more, and I think that is a real blank area with the NHS - they don't seem to have a clue that many people with ME have issues with their gut, whereas it's clearly so common.

To be honest by the time I saw Prof P I was so sceptical about the NHS approach that I was determined just to 'use' him in any way I could do help me, and I knew that the benefits support was what I needed the most, once I could not return to work following the relapse.

 

[barbc56]

Why would it fall into an 'alternative' category if one were not deficient? Pharmaceutical drugs aren't given because we are deficient in them

Because the use of B12 supplementation when a patient is not deficient doesn't have enough evidence of being an effective treatment for any medical condition. Whereas, B12 supplementation when there is a deficiency has been shown to be a treatment that has major benefits.

That's why I asked for clarification about this specific treatment which led to my question of who are considered the me/seid/cfs specialist.

It wasn't my intention to start a debate about alternative vs. science based medicine as my comments were in reference to specific questions about the poll.

It's really difficult deciding what to put in a poll and those who do post them are far wiser and braver than I am.

Barb

 

[oceiv]

Between the doctor situation and a couple bad illness days, I got knocked out for a bit. Let me see if I can answer @barbc56 's poll questions.

Regarding who is an expert, my opinion is that those docs who treat only ME/CFS (Some treat Fibro too), have extensive knowledge about the disease (of course there is much yet to be learned) and have had some success in treating their patients. We know there are no cures, but many patients experience at least some symptom relief. Some examples of experts IMO are Klimas, Peterson, Enlander, KDM, Chia, doctors at OMI, the now-retired Bell, etc.

As for the treatments, at least among the American experts (I'm most familiar with them), B12 supplementation by shots, sprays and other methods don't seem to be considered alternative treatment anymore. Decades of good outcomes with ME/CFS patients. I believe my B12 levels were normal when I started supplementing B12. The difference was enormous. To this day, this is one of the only fatigue treatments that makes a difference for me. At one point, my insurance covered the shots. My insurance doesn't cover alternative treatments, FWIW. Many insurance plans also cover B12 shots for allergy patients. A lot of ME/CFS experts end up using supplements, amino acids, minerals, herbs to treat patients, with good results. If things work, then for me, it doesn't matter which branch of medicine is working.

Very interesting conversation above.

 

[MeSci]

Anyone who wants to know just how scientific 'conventional' medicine really is may find this thread interesting.

 

[oceiv]

In the meantime, (before I get back to regular replies): @MeSci Very interesting indeed (and somewhat frightening). On a quick look, I couldn't tell what the publishing org is? Do they have an impartial purpose?

 

[barbc56]

@oceiv

Is this what you are looking for? I haven't had a chance to read it.

http://clinicalevidence.bmj.com/x/set/static/cms/efficacy-categorisations.html

Barb

 

[barbc56]

From the article.

We would like to emphasise that our categorisation of the effectiveness of treatments does not identify how often evidence-based and non-evidence-based treatments are used in practise. We only highlight how evidence based treatments are for certain indications, based on randomised controlled trials. As such, these data reflect how different treatments stand up evidence-based medicine and are not an audit of the extent to which treatments are used in practice or for other indications not assessed in Clinical Evidence

.

Unknown effectiveness’ is perhaps a hard categorisation to explain. Included within it are many treatments that come under the description of complementary medicine (e.g., acupuncture for low back pain and echinacea for the common cold), but also many psychological, surgical, and medical interventions, such as CBT for depression in children, thermal balloon ablation for fibroids, and corticosteroids for wheezing in infants

.
My bold.

This does not seem to be saying science based medicine is useless but shows that science as it should be is ever changing and includes frequest evaluation.. I really like the part I've put in bold.

This appears to be very similar to what Ioannidis is saying which is often misinterpreted that science should be thrown out the window. I still need to have a closer look at this BMJ Clinical Evidence article.

Science is not without it's flaws and some are pretty big. But the alternative is worse.

Barb

 

[MeSci]

From the article.

.

.
My bold.

This does not seem to be saying science based medicine is useless but shows that science as it should be is ever changing and includes frequest evaluation.. I really like the part I've put in bold.

This appears to be very similar to what Ioannidis is saying which is often misinterpreted that science should be thrown out the window. I still need to have a closer look at this BMJ Clinical Evidence article.

Science is not without it's flaws and some are pretty big. But the alternative is worse.

Barb

I would never argue that science generally is useless or should be thrown out of the window. It would be a very odd thing to argue after spending 10 hard years studying science and getting two degrees in it, and indeed doing freelance work in it.

But it should be borne in mine that there is scientific evidence behind many treatments that are classified by some as 'complementary' or 'alternative'. That's why I say that differentiating between natural treatments and pharmaceutical or surgical ones on the grounds of evidence is spurious.

This site cites and rates numerous studies on natural treatments.

As for the 'alternative' being worse, there are many more deaths and serious harms from 'conventional' medicine than from natural medicine.

And I finally fixed several health problems that doctors have failed to cure me of for decades, using natural products including diet.