Called an Encephalitis advisory line and it didn't go too well......

[livinglighter]

Hi all,

In my quest for a second opinion and further investigations into this bugger of an illness. I decided to call an Encephalitis advisory line for the names of UK neuroimmunologists. I casually asked, as one does, if there is accepted similarity between Myalgic Encephalomyelitis and Encephalitis, and the tone of the conversation changed. I was told to their understanding ME involves low-grade inflammation on the brain, which is chronic and Encephalitis is acute. I am perplexed by this because why would low-grade inflammation not cause the same clinical picture? I should have probably asked everyone on this forum beforehand, but I am desperate to break free of ME/CFS.

The lovely person I spoke to did agree that without objective testing, how can anyone be sure of the cause or what will help. Then they looked up some doctors on their database... Of course, the only doctor who appeared to have the expertise I am seeking isn't taking any more private patients...... The rest are also only available on the NHS.

I now need to carry out some of the more comprehensive tests to establish if I have any of the antibodies mentioned in this forum to see if I can access specialist NHS clinics.

 

[Wishful]

I am perplexed by this because why would low-grade inflammation not cause the same clinical picture?

Immune function is complex. It seems quite reasonable to have an acute viral or bacterial
inflammation that gives quite different symptoms from a low-grade inflammation from a different cause.

I now need to carry out some of the more comprehensive tests to establish if I have any of the antibodies mentioned in this forum to see if I can access specialist NHS clinics.

It's possible that the right tests could show signs of an active viral infection, and that treating that with antivirals could help, but it's also possible that you could eliminate all the microbes ... and still have ME. Microbial infections do seem to trigger ME, but it's not clear that they maintain it. So, I don't think you should put too much effort based on the assumption that testing and antivirals is a near-guaranteed cure for ME.

It would be nice if we had a tally of PWME who followed certain paths--testing and treatment, supplements, etc--and achieved effective treatments and cures. How many people actually 'broke free of ME' by going to a doctor? Unfortunately, without a reliable test for ME, I think we'd have lots of 'cures' of people who never had actual ME.

It's still possible to make significant improvements in our quality of life even without access to specialists, so don't lose hope just because that path is blocked. I wouldn't be surprised if most improvements in PWME are found without the help of doctors.

 

[livinglighter]

Immune function is complex. It seems quite reasonable to have an acute viral or bacterial
inflammation that gives quite different symptoms from a low-grade inflammation from a different cause.

It's possible that the right tests could show signs of an active viral infection, and that treating that with antivirals could help, but it's also possible that you could eliminate all the microbes ... and still have ME. Microbial infections do seem to trigger ME, but it's not clear that they maintain it. So, I don't think you should put too much effort based on the assumption that testing and antivirals is a near-guaranteed cure for ME.

It would be nice if we had a tally of PWME who followed certain paths--testing and treatment, supplements, etc--and achieved effective treatments and cures. How many people actually 'broke free of ME' by going to a doctor? Unfortunately, without a reliable test for ME, I think we'd have lots of 'cures' of people who never had actual ME.

It's still possible to make significant improvements in our quality of life even without access to specialists, so don't lose hope just because that path is blocked. I wouldn't be surprised if most improvements in PWME are found without the help of doctors.

Thanks @Wishful

I think I am hoping that I have overlooked recognised conditions that I can get treated, for symptom relief.

The way I am seeing it, I am not even sure if I have ME..... I have the symptoms of a lot of other conditions just worded in a different way.

I agree it should be possible to make significant improvements in our quality of life even without access to specialists. I'm just I'm tied up is several other matters, so it would be great to have the expertise of someone to guide the process. Plus I want an MRS, MRI with contrast or a PET scan to put my mind at ease.

 

[nerd]

Most medical practitioners aren't sensitized for chronic conditions and for their prevention. To them, you're either acute or you're perfectly healthy.

I've made a similar experience with one "expert" in MG. I was sent by my primary neurologist who believed that a neuromuscular diagnosis was justified. Instead of doing his job, this "expert" rejected a proper diagnosis and classified me as psychosomatic. Because I had a long diagnostic history and he didn't believe that I have the symptoms I told him I have. Apparently, you have to be an actor to get diagnosed in Germany. Seems like science was the wrong way to go. The word of a patient isn't worth anything. Neither is the word of another physician. If someone wants to believe what they need to believe, this is what matters.

So neurological co-morbidities were never diagnosed in my case. But I doubt it would have made any difference. Because "mild MG" doesn't exist as he told me. I guess he also believes that pre-diabetes and early Alzheimer's don't exist. This was the medical opinion 50 years ago. To be clear. I'm not saying that I'm absolutely convinced that MG shares its pathophysiology (not pathology) with CFS/ME, but I believe this hypothesis should be checked. Not a single study has evaluated this yet. Not a single study has analyzed the complete lymph system of CFS/ME patients.

Let's assume another version of myself got a positive diagnosis in some of these co-morbidities that never get checked for CFS/ME patients. Let it be MS, ALS, Parkinson, early Alzheimer's, MG, SLE, latent EBV (which doesn't exist either), some rare kind of Pancreas disease, whatever. Once I'd have the diagnosis, they would claim it's always been this diagnosis and that I never had CFS/ME. Or I wouldn't even get this diagnosis in the first place. So CFS/ME can remain a diagnosis for the "difficult ones". The diagnosis without integrated check-ups, treatment, care, and all the other things that you normally get once you have a "real" diagnosis.

It's the same story for mild and early cases of many diseases such as Diabetes. When standard diagnostics aren't sensitive enough to detect the early forms of chronic conditions and patients are left alone and treated like they just need a push or psychosomatic treatment or whatever. Give them some time and they eventually end up acute in the hospital. From there on, they have an almost irreversible chronic condition. How "lucky" they have to be, now as they get integrated treatment. But they won't get their lives back. They don't have to know that it could have been prevented. They knew that something was wrong. But nobody would listen. And no doctor will thematize this. The doctor who sent the patient away might think until today that this patient must have been psychosomatic. Because the patient isn't stupid enough to ever go back to this one and tell him about the new diagnosis he got from the hospital.

 

[livinglighter]

Most medical practitioners aren't sensitized for chronic conditions and for their prevention. To them, you're either acute or you're perfectly healthy.

I've made a similar experience with one "expert" in MG. I was sent by my primary neurologist who believed that a neuromuscular diagnosis was justified. Instead of doing his job, this "expert" rejected a proper diagnosis and classified me as psychosomatic. Because I had a long diagnostic history and he didn't believe that I have the symptoms I told him I have. Apparently, you have to be an actor to get diagnosed in Germany. Seems like science was the wrong way to go. The word of a patient isn't worth anything. Neither is the word of another physician. If someone wants to believe what they need to believe, this is what matters.

So neurological co-morbidities were never diagnosed in my case. But I doubt it would have made any difference. Because "mild MG" doesn't exist as he told me. I guess he also believes that pre-diabetes and early Alzheimer's don't exist. This was the medical opinion 50 years ago. To be clear. I'm not saying that I'm absolutely convinced that MG shares its pathophysiology (not pathology) with CFS/ME, but I believe this hypothesis should be checked. Not a single study has evaluated this yet. Not a single study has analyzed the complete lymph system of CFS/ME patients.

Let's assume another version of myself got a positive diagnosis in some of these co-morbidities that never get checked for CFS/ME patients. Let it be MS, ALS, Parkinson, early Alzheimer's, MG, SLE, latent EBV (which doesn't exist either), some rare kind of Pancreas disease, whatever. Once I'd have the diagnosis, they would claim it's always been this diagnosis and that I never had CFS/ME. Or I wouldn't even get this diagnosis in the first place. So CFS/ME can remain a diagnosis for the "difficult ones". The diagnosis without integrated check-ups, treatment, care, and all the other things that you normally get once you have a "real" diagnosis.

It's the same story for mild and early cases of many diseases such as Diabetes. When standard diagnostics aren't sensitive enough to detect the early forms of chronic conditions and patients are left alone and treated like they just need a push or psychosomatic treatment or whatever. Give them some time, and they eventually end up acute in the hospital. From there on, they have an almost irreversible chronic condition. How "lucky" they have to be now as they get integrated treatment. But they won't get their lives back. They don't have to know that it could have been prevented. They knew that something was wrong. But nobody would listen. And no doctor will thematize this. The doctor who sent the patient away might think until today that this patient must have been psychosomatic. Because the patient isn't stupid enough to ever go back to this one and tell him about the new diagnosis he got from the hospital.

Nerd, I couldn't have said it better myself! My sense of humour has always been a bit off, so I also had a giggle when reading it.

I think after some testing. If I manage to find any markers of concern, I will try the field of neuroimmunology again.

That said, both the advisory line and other members on here have mentioned you can sometimes find doctors with an open mind or who are willing to help when they express their interests in 'fatiguing illnesses' or 'inflammatory illnesses'. They tend to not mention ME/CFS anywhere, even in their patient follow-up correspondence with GP's.

I do have a neurologist who luckily is an autonomics specialist. He almost threw the book at me when I got a CFS diagnosis before he had the chance to carry out more complex investigations. He said the diagnosis would mean my symptoms are not physical, which perplexed me at the time as no one informed me. To cut a long story short, he has recently agreed to carry out an autonomics test to see what may be found, but won't allow me to mention ME/CFS again. He said I need to forget about it as there is no help. He said it is better to try and isolate recognised conditions so I can receive medical treatments. I thought I'd mention this because, again, there are doctors who may help, but it may not be as presenting yourself as a CFS patient, and you won't find them advertising an interest in it either.

The advisory line also kindly suggested when contacting doctors privately I may want to mention I feel my symptoms from my previously diagnosed conditions have been mistakenly generalised as ME symptoms, and I'd like a second opinion to see if what I might have is another separate condition alongside my pre-existing ones. This could be the case of course, but it seems like a lot of dancing around just to be considered as having physical complications.

 

[nerd]

I think after some testing.

In my case, I have sufficient immunological evidence that leaves no doubt that there is some immunologically-mediated pathology going on. It is most likely virally-induced pathophysiology, but as I read, parasites could theoretically trigger similar mechanisms. But EBV seems to be the most likely case due to increasing antibody levels. Overall, the relevant biomarkers are 10 to 40 fold the normal levels. This is far off any natural deviation. The problem is that none of the findings are specific enough for a particular disease.

Because diseases are still defined like in medieval times - by symptoms only. Because current medical research still assumes that symptoms are the problem and not that pathology is the problem and symptoms just the manifestation of pathology. This non-causal interpretation of diseases is the blocker in CFS/ME research.

 

[livinglighter]

In my case, I have sufficient immunological evidence that leaves no doubt that there is some immunologically-mediated pathology going on. It is most likely virally-induced pathophysiology, but as I read, parasites could theoretically trigger similar mechanisms. But EBV seems to be the most likely case due to increasing antibody levels. Overall, the relevant biomarkers are 10 to 40 fold the normal levels. This is far off any natural deviation. The problem is that none of the findings are specific enough for a particular disease.

Because diseases are still defined like in medieval times - by symptoms only. Because current medical research still assumes that symptoms are the problem and not that pathology is the problem and symptoms just the manifestation of pathology. This non-causal interpretation of diseases is the blocker in CFS/ME research.

I see it’s even more complex then I thought, even with evidence of abnormalities it doesn’t always point to a specific condition......

What are the next steps after that then?

 

[nerd]

I see it’s even more complex then I thought, even with evidence of abnormalities it doesn’t always point to a specific condition......

What are the next steps after that then?

Standard medicine follows guidelines. For example, you have to appear with sufficiently-indicative EBV symptoms to get this anamnesis and antibodies checked. This is interpreted categorically. Either you are IgM positive or not. If IgM-Abs are negative, they put an "EBV negative" stamp in your file and it will become more difficult to get rechecked. Every clinician has a different understanding of their guidelines. Some don't know that you have to test early antigen (EA) for EBV reactivations, so they simply test VCA.

Once you're negative, that's it. Because this is where the guideline ends. Many physicians will be reluctant to repeat their diagnosis with a different anamnesis. You can go to another physician and repeat. Given the same symptoms, they might come up with a completely different anamnesis. This is due to the different knowledge and experience of physicians. No physician can possibly know and remember everything. Unfortunately, this also means that they will not understand specialized pathological reports from another doctor. So they order everything from their own laboratory as they understand it. Don't try to talk with them about your previous biomarkers, or they will suspect that you are a hypochondriac who is just overreacting over some harmless positive result for which you read something "online". This means they will do nothing more than go over another or the same guideline for a specific disease. Whatever they do, it won't be anything structural, scientific, and methodical. They just follow a sequence for the most likely interpretation of your symptoms. Unlikely and yet possible interpretations don't matter.

You would have to try and repeat this with every possible co-morbidity, and there are more than you will be able to find new experts because most will stop after their initial "confirmation that you are perfectly healthy". This applies to Germany especially because only "experts" are allowed to diagnose certain diseases. You can't go to a GP and ask for all possible immunological blood tests. They wouldn't even know a laboratory for it. In the end, you will have to have luck and find an expert who is willing to follow through and maybe accept you as a case study so that there aren't any issues with guidelines. This allows pathologically specific treatment.

 

[livinglighter]

Standard medicine follows guidelines. For example, you have to appear with sufficiently-indicative EBV symptoms to get this anamnesis and antibodies checked. This is interpreted categorically. Either you are IgM positive or not. If IgM-Abs are negative, they put an "EBV negative" stamp in your file and it will become more difficult to get rechecked. Every clinician has a different understanding of their guidelines. Some don't know that you have to test early antigen (EA) for EBV reactivations, so they simply test VCA.

Once you're negative, that's it. Because this is where the guideline ends. Many physicians will be reluctant to repeat their diagnosis with a different anamnesis. You can go to another physician and repeat. Given the same symptoms, they might come up with a completely different anamnesis. This is due to the different knowledge and experience of physicians. No physician can possibly know and remember everything. Unfortunately, this also means that they will not understand specialized pathological reports from another doctor. So they order everything from their own laboratory as they understand it. Don't try to talk with them about your previous biomarkers, or they will suspect that you are a hypochondriac who is just overreacting over some harmless positive result for which you read something "online". This means they will do nothing more than go over another or the same guideline for a specific disease. Whatever they do, it won't be anything structural, scientific, and methodical. They just follow a sequence for the most likely interpretation of your symptoms. Unlikely and yet possible interpretations don't matter.

You would have to try and repeat this with every possible co-morbidity, and there are more than you will be able to find new experts because most will stop after their initial "confirmation that you are perfectly healthy". This applies to Germany especially because only "experts" are allowed to diagnose certain diseases. You can't go to a GP and ask for all possible immunological blood tests. They wouldn't even know a laboratory for it. In the end, you will have to have luck and find an expert who is willing to follow through and maybe accept you as a case study so that there aren't any issues with guidelines. This allows pathologically specific treatment.

It sounds like the situation in Germany is a very unfavourable one. Will anyone test you for POTS at least?

 

[nerd]

Will anyone test you for POTS at least?

Not so far, but this might change once the COVID-19 pandemic is over. Initially, the MG neurologist was supposed to test this and other things.

 

[livinglighter]

Not so far, but this might change once the COVID-19 pandemic is over. Initially, the MG neurologist was supposed to test this and other things.

I am hoping you can find a cardiologist or neurologist to test for POTS. It doesn't look like I will be seen until after the pandemic as well.

I've read on this forum it's a good idea to try and exacerbate symptoms for the test as well, otherwise results often show as borderline.....

If you can make it to the UK there are a few doctors that assist people like us who they suspect have POTS and endocrine conditions, I'm not sure if that can help you get an accepted diagnosis in Germany?

 

[nerd]

I'm not sure if that can help you get an accepted diagnosis in Germany?

Probably not. Different guidelines and different doctor's opinions don't count. Germans are arrogant enough to assume that everything in foreign countries is inferior. Objectively, the German health system is worse than in many other countries. But subjectively, it's better. Because it costs much more money here. So it must be better, no second-guessing.

 

[Wishful]

The way I am seeing it, I am not even sure if I have ME

Do you have definite PEM? That's not simply feeling worse after exertion, which is fairly normal; it's a set of symptoms that reliably occur after exertion, usually with a consistent delay. Check the wiki page if you haven't already: https://me-pedia.org/wiki/Post-exertional_malaise

Getting checked for other medical problems is reasonable. There's always a chance that they might find something treatable. The problem is that our symptoms are so hard to define that the doctors don't know what to test for. Medical funding being what it is, they aren't going to do all possible (expensive) tests for everyone who comes in with vague complaints.

I was quite disappointed when I first tried the medical system. I thought they'd do a standard set of tests, and if that didn't diagnose the problem, they'd do the next set of more expensive tests meant to reveal less common diseases, and maybe there would be several more sets, for progressively less common diseases. Instead, it was just: "The standard tests don't show any problems. Can't help you. Bye." That applied to specialists as well.

I think most PWME go through the process of trying to get extensive testing done, and most of us get either negative results or: "The results are a bit abnormal, but I don't know what they mean so I can't help you." As with supplements and other treatments, I expect that most of us simply waste a lot of time and resources ... but a few of us do find something that does make a difference, so I can't simply say it's not worth pursuing. I think of it as a lottery: it is possible to win, but it's up to each of us to decide how much money we're going to invest in it.

I do recommend putting a reasonable amount of effort into medical testing. I recommend against putting all your hopes on the medical system as the only way to reduce ME symptoms.


BTW, instead of quoting a whole message, you can just highlight (mouse over) the text you want to quote, and click on the 'reply' button that pops up. The 'quote' option allows multiple quotations.

 

[livinglighter]

Do you have definite PEM? That's not simply feeling worse after exertion, which is fairly normal; it's a set of symptoms that reliably occur after exertion, usually with a consistent delay. Check the wiki page if you haven't already: https://me-pedia.org/wiki/Post-exertional_malaise

I do get PEM, but PEM doesn't explain the underlying cause as far as I'm aware. It could happen in other conditions where the cause is identified without the term PEM used.

Getting checked for other medical problems is reasonable. There's always a chance that they might find something treatable. The problem is that our symptoms are so hard to define that the doctors don't know what to test for. Medical funding being what it is, they aren't going to do all possible (expensive) tests for everyone who comes in with vague complaints.

I was quite disappointed when I first tried the medical system. I thought they'd do a standard set of tests, and if that didn't diagnose the problem, they'd do the next set of more expensive tests meant to reveal less common diseases, and maybe there would be several more sets, for progressively less common diseases. Instead, it was just: "The standard tests don't show any problems. Can't help you. Bye." That applied to specialists as well.

What you've said here seems to be where I am now. Due to the hard to define symptoms, I've had a few standard tests and nothing has been found. I had the 'big one', an MRI (without contrast) where I believe my GP thought it should show something. When it came back normal, she began referring to my normal test results as a reason she is reluctant to make any more referrals. The reluctancy I'm already facing is why I now want to pay for the more expensive tests and ones for progressively less common diseases. I understand this hurdle in the NHS. More recently, it has also come to my attention that despite being willing to pay for expensive tests yourself, you need the doctor capable of doing it to be willing to first. ME/CFS seems to be a diagnosis that makes medical professionals automatically think you are barking up the wrong tree as it is a functional disorder.

I think most PWME go through the process of trying to get extensive testing done, and most of us get either negative results or: "The results are a bit abnormal, but I don't know what they mean so I can't help you." As with supplements and other treatments, I expect that most of us simply waste a lot of time and resources ... but a few of us do find something that does make a difference, so I can't simply say it's not worth pursuing. I think of it as a lottery: it is possible to win, but it's up to each of us to decide how much money we're going to invest in it.

I do recommend putting a reasonable amount of effort into medical testing. I recommend against putting all your hopes on the medical system as the only way to reduce ME symptoms.

I do agree Wishful, I'll keep going for a while to see if anything else critical shows up. But as you've wisely suggested I won't put all my hopes into the medical system for help.

BTW, instead of quoting a whole message, you can just highlight (mouse over) the text you want to quote, and click on the 'reply' button that pops up. The 'quote' option allows multiple quotations.

Thanks for the heads up!

 

[JES]

Nerd, I couldn't have said it better myself! My sense of humour has always been a bit off, so I also had a giggle when reading it.

I think after some testing. If I manage to find any markers of concern, I will try the field of neuroimmunology again.

That said, both the advisory line and other members on here have mentioned you can sometimes find doctors with an open mind or who are willing to help when they express their interests in 'fatiguing illnesses' or 'inflammatory illnesses'. They tend to not mention ME/CFS anywhere, even in their patient follow-up correspondence with GP's.

I do have a neurologist who luckily is an autonomics specialist. He almost threw the book at me when I got a CFS diagnosis before he had the chance to carry out more complex investigations. He said the diagnosis would mean my symptoms are not physical, which perplexed me at the time as no one informed me. To cut a long story short, he has recently agreed to carry out an autonomics test to see what may be found, but won't allow me to mention ME/CFS again. He said I need to forget about it as there is no help. He said it is better to try and isolate recognised conditions so I can receive medical treatments. I thought I'd mention this because, again, there are doctors who may help, but it may not be as presenting yourself as a CFS patient, and you won't find them advertising an interest in it either.

The advisory line also kindly suggested when contacting doctors privately I may want to mention I feel my symptoms from my previously diagnosed conditions have been mistakenly generalised as ME symptoms, and I'd like a second opinion to see if what I might have is another separate condition alongside my pre-existing ones. This could be the case of course, but it seems like a lot of dancing around just to be considered as having physical complications.

Your neurologist is probably right in that this is the pragmatic approach to take since the diagnosis of ME/CFS won't really get any neurologist attention at least over here in Europe. If they can find something else, there's always a better chance it can be treated. He is wrong about ME/CFS not being physical. Just because no biomarker has yet been found using our current knowledge and technology doesn't prove that physical abnormalities don't exist, that's a classic fallacy. Based on the same reasoning, Parkinson's disease must not be physical.

Autonomic dysfunction or POTS isn't unfortunately well understood either, but I think doctors view that as slightly less muddled than ME/CFS. Depending on the type of autonomic dysfunction, there might be some treatment available at least for symptoms. CellTrend in Germany is one company that measures autoantibodies against adrenergic and muscarinic receptors, which are thought to contribute to autonomic dysfunction. I had my samples sent there, but the clinic would probably need to be familiar with this lab before agreeing to order these tests.

 

[Wishful]

Just because no biomarker has yet been found

Actually, I think they have found biomarkers. They just haven't yet found one that is definitively unique to ME, and to all variants of ME. ME might require a set of factors, such as "This gene present, and that gene blocked from expression, and the ratio of these two proteins in CSF being <.3, and ...". There might be some easier markers with a 60% chance of indicating ME (and a 25% chance of indicating one of several other diseases), or a test with and 80% chance of indicating a form of ME that comprises 15% of the ME population.

There seems pretty strong evidence that ME is a physical disorder. There are various reasons why doctors aren't readily accepting that. Medical insurance companies are probably working to prevent having to pay out money. Doctors don't like having to deal with diseases that they can't do anything about. Some doctors just want easy patients. This will probably change slowly, unless malpractice lawsuits for failing to diagnose ME properly become successful.