Is it possible to prove that you have ME?

[andrie]

Hey all,

I have been ill with ME for about two years. Then I got a bad viral infection and haven't recovered since. Prior to this I was healthy, athletic and successful. But after two years of ME and very little sleep I've become very, very ill. My cognition is a mess, reading, writing and even speaking has become very difficult. I'm often very confused and I have severe memory loss a long with fatigue. Basically feels like my frontal lobe has shut down entirely.

Sadly I have become reliant on my parents and have become very isolated and I don't speak much anymore. Due to this the question of whether I'm just mentally ill has often been raised even though I have been diagnosed with CFS/ME by a very well respected doctor who specializes in these sorts of illnesses.

But I feel I need hard evidence of the illness just so I don't have to worry about being checked into a mental institute. So I was wondering, what can be done?

I've heard about SPECT scans. Are they 100% reliable in diagnosing ME? And is there anything else?

 

[Valentijn]

SPECT scans can show abnormalities, but I don't think they're particularly diagnostic.

The 2-day CPET has been shown by several independent groups of researchers to produce abnormal results for ME/SEID patients on the 2nd day. Essentially, it documents the existence of PEM, and so far they haven't found other illnesses which have the same reaction. Healthy and sedentary controls do about the same or slightly better on a maximal CPET 24 hours after the first one, but ME/SEID patients do significantly worse.

It's a completely objective test. Maximal effort is determined my measuring intake and outake of oxygen and CO2, so it can't be gamed by slacking off.

 

[cigana]

Your best bet is the mitochondrial test offered by Dr Myhill. Although they don't prove 'ME', they prove your mitochondria aren't able to produce energy properly.

 

[alex3619]

While I am a fan of the 2 day CPET it runs the risk of trigger a serious decline in health.
Its a great research tool, and is sometimes used to prove severe pathophysiology, and is currently considered a hallmark of post exertional relapse in ME, but is not by itself diagnostic of ME.

There are lots of tests that could be done. A test which is less dangerous but not completely safe is the tilt table test. It can confirm the existence of an other hallmark issue in ME, orthostatic intolerance.

There is a safe test which I think should be used more, quantitative EEG. I need to go for one myself, so maybe I will report on it later. It can give some assessment on how well the brain is functioning.

All 3 of these tests are 1940s technology, though modern versions are more sophisticated. Than can show severe pathophysiology. They are still not diagnostic, but in combination they objectively show three of the important criteria for diagnosing ME.

Another test I think most if not all ME patients should have is a sleep study. In a lot of us this can show a sleep disorder that is often treatable. It also documents another layer of physical problems.

 

[alex3619]

An important point though is nobody can currently prove they have ME. What we can do is prove they fit the diagnostic criteria. That is not quite the same thing.

 

[ukxmrv]

I'm really sorry to hear how you are suffering both in being sick and with disbelief.

Being able to prove that you have ME or CFS/ME isn't going to be enough to save you from a mental institution if people are determined to put you there.

I speak from the experience of having visited psychiatric hospitals to see PWME and from talking to patients who have faced being sectioned. That is a UK term for when you can be placed into a psych hospital against your will. I'm note sure where you live but there is sure to be a similar process.

You haven't said who it is that you face this risk from?

If I was in your position I would gather as much concrete evidence that I could of the types of abnormalities found in PWCFS and find as many champions as I can. That is very hard to do when stuck at home in bed and reliant on your parents.

Sadly, if you are defenseless and sick and unprotected, then you can be at the mercy of some pretty evil doctors and we have had cases (and some are still ongoing) of ME and CFS taken against their will and incarcerated in psychiatric hospitals.

In my own case I am very careful as to what doctors I will see and what tests I will have performed on me.

Do you have any siblings or friends who could help with this? A local ME or CFS group or even a mental health advocate?

 

[*GG*]

While I am a fan of the 2 day CPET it runs the risk of trigger a serious decline in health.
Its a great research tool, and is sometimes used to prove severe pathophysiology, and is currently considered a hallmark of post exertional relapse in ME, but is not by itself diagnostic of ME.

There are lots of tests that could be done. A test which is less dangerous but not completely safe is the tilt table test. It can confirm the existence of an other hallmark issue in ME, orthostatic intolerance.

There is a safe test which I think should be used more, quantitative EEG. I need to go for one myself, so maybe I will report on it later. It can give some assessment on how well the brain is functioning.

All 3 of these tests are 1940s technology, though modern versions are more sophisticated. Than can show severe pathophysiology. They are still not diagnostic, but in combination they objectively show three of the important criteria for diagnosing ME.

Another test I think most if not all ME patients should have is a sleep study. In a lot of us this can show a sleep disorder that is often treatable. It also documents another layer of physical problems.

I had the 2 day CPET done, it showed I have 60% of the capacity of people my age, sex etc..Haven't looked at the report in a while. Done in 2010.

I also had the Tilt table test done as part of a research study, they did not diagnose me with anything from that, but I was found to have small fiber poly neuropathy, they were looking at Fibro patients. Done in Boston, MA.

GG

 

[alex3619]

I also had the Tilt table test done as part of a research study, they did not diagnose me with anything from that, but I was found to have small fiber poly neuropathy, they were looking at Fibro patients. Done in Boston, MA.

The tilt table test is for one of the optional diagnostic criteria. It does not always show problems. What it can show is the existence of yet another symptom that can be used for diagnosis.

Small fiber polyneuropathy seems to be common. Yet I don't know how helpful it is for diagnosis. It does however show yet another physical problem. Maybe half of us have this, but then so do people with many other disorders, except I suspect there are subtypes.

 

[andrie]

I'm really sorry to hear how you are suffering both in being sick and with disbelief.

Being able to prove that you have ME or CFS/ME isn't going to be enough to save you from a mental institution if people are determined to put you there.

I speak from the experience of having visited psychiatric hospitals to see PWME and from talking to patients who have faced being sectioned. That is a UK term for when you can be placed into a psych hospital against your will. I'm note sure where you live but there is sure to be a similar process.

You haven't said who it is that you face this risk from?

If I was in your position I would gather as much concrete evidence that I could of the types of abnormalities found in PWCFS and find as many champions as I can. That is very hard to do when stuck at home in bed and reliant on your parents.

Sadly, if you are defenseless and sick and unprotected, then you can be at the mercy of some pretty evil doctors and we have had cases (and some are still ongoing) of ME and CFS taken against their will and incarcerated in psychiatric hospitals.

In my own case I am very careful as to what doctors I will see and what tests I will have performed on me.

Do you have any siblings or friends who could help with this? A local ME or CFS group or even a mental health advocate?

Honestly, I don't know what is worse the illness it self or the disbelief and fear of being sectioned. Who do I face the risk from? I guess my parents and the doctors I saw first. They were absolutely clueless about CFS/ME and said that I was a hypocondriac or that I was severely depressed. Which I am most certainly not. Even though I was later diagnosed with ME this has never left my parents minds. And they believe that someone who can't sleep and is so isolated must be depressed. Honestly it's crazy, seeing that prior to this illness I was so social that I was never at home.

Just two seconds ago a family member just said to me "you should just go backpacking across europe, that would cure you". So that's the ignorance I face daily and it's rough. I thought the spect scan was guaranteed to diagnose this but I guess not. It was the one test that I thought that I could demand if I was ever accused of being mental again. Although I have hard time believe that nothing will show up considering the cognitive dysfunction I'm facing.

 

[A.B.]

Show them the IOM report. Family and doctors are more likely to take you seriously if there are other sources supporting your position.

 

[sarah darwins]

Your best bet is the mitochondrial test offered by Dr Myhill. Although they don't prove 'ME', they prove your mitochondria aren't able to produce energy properly.

I don't think Dr Myhill is currently accepting new patients, or offering test interpretation for any but existing patients (as of an announcement on her website in Feb 2015).

I think maybe I saw mention here of someone else offering a similar test, but I can't remember who it was (if anyone). Do you happen to know?

 

[cigana]

I don't think Dr Myhill is currently accepting new patients, or offering test interpretation for any but existing patients (as of an announcement on her website in Feb 2015).

I think maybe I saw mention here of someone else offering a similar test, but I can't remember who it was (if anyone). Do you happen to know?

You don't need to be her patient to order those tests (it's a separate lab), I suppose you will need a doctor though.

 

[Hip]

I don't speak much anymore.

A few years ago when my ME/CFS was worse than it is now, I often would not be able to muster the energy to speak. Sometimes with severe brain fog, putting together a sentence can be exhausting, and you lose the normal spontaneous desire and ability to speak.

My health has improved in the last few years, probably as a result of the supplements I am taking, and these days I find talking easier. But even now, when I have over-exerted myself, and the PEM appears, I often revert back to minimal, terse speech and one-word answers, which is sometimes all my brain can muster.


Have you looked into trying some ME/CFS treatments by the way? An overview of some of the treatments available can be found in this roadmap of chronic fatigue syndrome (ME/CFS) viral tests and treatments.

Just two seconds ago a family member just said to me "you should just go backpacking across europe, that would cure you". So that's the ignorance I face daily and it's rough.

One thing I found very helpful in educating my skeptical parents was giving them a book on ME/CFS to read. After they read the book, they had a very different, more educated view on ME/CFS. The book I bought was "Chronic Fatigue Syndrome, Fibromyalgia And Other Invisible Illnesses" by Katrina Berne, PhD, which is very readable, in part because many sub-sections start with a nice pithy quotation. But any good literature on this illness should be helpful.

By giving a book to read, it is like bringing in a third person and third opinion into the discussion. It's no longer just you and them talking, with you trying to convince them; with the book, the author becomes an additional person in the conversation, and moreover an unbiased, authoritative person, which is why what the author says in the book will carry a lot of weight.

 

[MCRobbie]

@ggingues Im curious where you had the CPET done in Boston.