Is tinnitus an ME symptom? - Discussion of evidence

This post has been copied and discussion moved from this thread:
Tinnitus treatment

It's common in both ME and LC. Some after vaccines too, although it's still unclear whether it's vaccines alone, or the immune system's reaction to the vaccine. Temporary in some cases, chronic in others. It's one of the most common frustrations I see and it's always dismissed by clinicians. Neurologists are especially useless and insulting at it.

Medicine is unaware of this because unasked questions are unanswered, but it definitely has something to do with PVFS/ME whatever, a common consequence of infections.

 

Copied post

No it isn't. Lots of people with ME may have tinnitus but there is no evidence that tinnitus is caused by whatever causes ME.

This is exactly what this forum should not be about - assuming that symptoms can be attributed to ME when they may well be due to something else that is important.

One sided tinnitus requires investigation so the poster should seek medical advice, even if no specific cause is found.

 

I don't think Richard is suggesting that OP doesn't get it checked out, particularly as OP seems to be recovered/in remission.

There is limited data on the prevalence rate of tinnitus in ME and LC, but they do suggest that tinnitus is common in both. The Dowsett paper in 1990 had auditory disturbances (tinnitus, hyperacusis, hearing loss) as one of the most prevalent symptoms in ME, at 69%. For many people, the tinnitus starts during the initial illness, with all the other symptoms, and never goes away. For others, it might be related to medication they have started due to illness. The number of medications that can cause tinnitus / are ototoxic is huge.

 

I think this sort of approach should be looked at very critically. Tinnitus is common, period. I have it and so do lots of people I know. And so is hearing loss. Did the Dowsett paper include controls and was it carried out in such a way as to avoid subjective bias - I bet not. And since tinnitus can be become apparent at any time in many cases it will start during a chronic illness.

If tinnitus really was part of ME it would tell us something hugely important scientifically. So it is very important to know if there is reliable evidence. None of that sounds like reliable evidence.

One of the main reasons why PWME do not get the respect and attention they deserve is that it is widely believed that they think they have a disease that does not exist. Collecting every possible symptom under the umbrella of ME is one of the best ways of convincing the medical profession this is the case. The way to make the medical profession sit up and take ME seriously is to show that the patient community is more scientifically critical than they are. Criticism of BPS research can be shrugged off if it is accompanied by equally dubious claims. But if the advocacy community focuses on reliable evidence it becomes much harder. That has pretty much been achieved now. We don't want to row back.

 

What do you think it would tell us that we don't already know/suspect? Because tinnitus is not well understood at all. I have read some of the main papers and theories, as I have with ME science, and there are some parallels in how the symptoms/conditions are understudied and not well understood. I would say we are at the hypothesis stage for both.

 

I think it would tell us a lot. Particularly if the detail of the phenomenon associated with ME was looked at.

Tinnitus is not really 'not well understood' at the level ME is. We know that tinnitus involves dysregulation of signal flow in the auditory nerve. We know that the problem can be peripheral as in acoustic neuroma or also have a more central, or at least more subtle feedback, component, as for presbyacusis. We know quite a bit about the nature of the regulatory failure with various causes.

It is true that we do not know much about why some people have unexplained tinnitus and others do not but at least we know mechanisms. For ME we don't know anything specific.

If ME was genuinely associated with tinnitus then we would know that central sensory pathways were disturbed. Tinnitus reporting by PWME might of course be confounded by the fact that awareness of tinnitus is dependent on attention. However, tinnitus investigators like Jonathan Hazell developed methods for characterising features that do not appear to be just attention dependent - such as pitch, 'whiteness' and rhythmicity. If there is an association it ought to be possible to establish, for instance, whether it is simply a manifestation of general sensory sensitivity or something specific.

 

Widely believed by a medical community that should be embarrassed and ashamed of itself. One that I suspect History will not reference kindly.

What an unfortunate stereotype. But no worries since we seem incapable of convincing the past 50 years of medical profession much of anything. Hubris is tough.

We are not the reason the medical profession has dropped the ball in areas like ME/CFS, nor is this dereliction limited to ME/CFS. Moreover, we should not be held responsible for them getting their act together. Last I checked, we are the sick one, the ones they are charged with helping.

 

Of course not but that is all beside the point. I am talking about the tactics of solving the problem.

And plugging weak evidence on the biomedical side is still a huge tactical problem for the ME community. It's a bit like an amateur tennis player playing to Roger Federer's crosscourt backhand. 'This division between physical and psychological is spurious dualism.' - game over. I worry that advocates talking to politicians now are still making the same mistakes.

 

That would be news to the many people experiencing it. Including me. My ears are especially surprised not to hear right now. And now. And for the last several years. It's not recorded anywhere except in passing mention, because there's no point "diagnosing" a symptom.

As I said, it's not surprising for medical professionals to be unaware of this, in fact it's expected. There is no way for healthcare services to be aware of this because they typically don't record that information, dismiss it. Medicine is willfully blind to things like that for reasons that will never make sense.

But it is widely reported in the several thousand reports I have seen over the last 2 years, and usually absent from medical notes. It often goes away, fortunately. Maybe that's why it's often not recorded, but almost never recording it, well, it leads to the same old cycle of "no evidence of reports" to... people making reports. Same as GET being harmful to us.

 

My tinnitus began with onset of ME. I have never been offered any help and GP has never recorded it even though I've mentioned it. I feel my tinnitus originates in the centre of my brain though, not one or both ears. It gets really bad with PEM. I would love a trt for it.

 

What do you imagine patients bring to the discussion? What do you imagine clinicians bring?

They both bring expertise, albeit it different forms, sure.

But neither brings definitive knowledge of cause when it comes to persistent symptoms. Neither. Neither brings adequate diagnostics to help determine cause either.

So, clinicians bring to the tactics discussion a knowledge pool that clearly is as large as it is inadequate. They bring learned bias, too.

What do patients bring? They cannot match the broad base of information a formal education supplies. But they have insight derived from first hand experience. This does not help much when it comes to cause, but it does in allowing for associations. We can speak to associations. That doesn't garner much respect with clinicians, though, does it?

But when clinicians say, "Hey, you have sleep issues? Many many people have sleep issues. You imagine you're not as cognitively sharp anymore? Hell, in today's intellectually demanding age, and what with football and falls and such, many many people have to deal with brain fog. You suffer joint pain? Muscle pain? These sound like the aches and pains of every day life. You've a laundry list of problems, but the fact is your complaints and the associations you are making with what you think is a disease have little substance and little merit."

Who's missing the point? Who's not listening that is supposed to listen, and keenly and with purpose?

What's not addressed in medical offices around the world are degrees and duration. And the effect in total, the symptom amalgam. Not beyond a basic lip service, by and large. The associations patients bring to the table are reinforced by our experience with specificities and degrees and durations, and that is a good tactic if you can get clinicians to listen and researchers to report it right. We can't though, not often enough it seems.

If you think our tactic needs to be learning what the clinicians already know, and has failed them, I don't see the point. Critical thinking, sure. I'm all for that. Embracing the scientific method? That, too. I cannot think of a single pwME on this forum that is not.

The strengths of the medical profession, however, are at least, in part, supposed to be accounting for those patients' associations, and that they are not to me speaks to an irony that it will be difficult for any tactic to overcome.

 

Absolutely not. How can one person have any experience of whether or not their symptom is associated with a condition they are known to have? Association is established across a population, not in an individual. We are talking about association in the sense of a statistically higher rate of concurrence.

 

So, patients read.

And don't be so fast to dismiss the power of anecdotes. It's what many case studies are all about, and case studies frequently defy large study results, and can help inform changes to orthodoxy.

 

Not sure what that means.

I am not dismissing the power of anecdote but anecdote is not in itself enough.

I have no idea what that means either.

I may seem pedantic but it seems there is a problem here with the most fundamental issues about how reliable evidence is gathered. You need unbiased comparators. All evidence depends on comparators. Our brains use comparators at an unconscious level even before they provide us with sensations. And reliable evidence needs reliable unbiased comparisons.

I agree absolutely that most of my medical colleagues fail on fundamental logic. Sadly I am pretty sure that over the last forty years the dumb ones have come to dominate the politics. But remember that people who make logical mistakes themselves may be very good at spotting the same mistakes in others! The sharpest critics are often the poorest critics of themselves. I will grant that the BPS dimbos don't seem to be able to see basic problems at all but I don't see them as the people to persuade. The people to persuade are people like Fiona Watt at MRC or Mark Walport's successor at the Wellcome. People like Robert Souhami, who I met just last week (he is 84 now). He used to run the Cancer Research Fund. He has no difficulty seeing all the flaws in unblinded trials and biased sampling. He doesn't fund ME research but if he did he would be open to good scientific arguments about what to fund. If the advocacy community clutters things up with poor quality evidence people like him lose interest.

 

You cannot see the irony here? Conventional medicine has not allowed poor quality evidence to slow its momentum for years, and yet the responsibility lies with us?

But I tell you that I suspect most here would have no problem accepting that. It's just that I'm not really clear on who decides what is poor quality vs good quality. I am clear that - for me at least - patients should speak their mind without being told they should not unless someone approves it.

 

I have tinnitus, however, I don't think it has anything to do with ME. I definitely think that my love of loud music is the cause. The covid vaccine turned it from a soft humming sound to a loud screeching noise.

 

Not sure what "So, patients read" means? It means pretty much everything clinicians can read, patients can read, and frequently do, and maybe some things clinicians haven't read. It means pwME are no more likely to have uninformed opinions about ME/CFS than clinicians - and usually are far better informed about their disease. How? They read. Not only do they read, they come at the subject with more of an open mind than most - one that is strikingly absent from many clinicians I've run across.