The Nightingale definition of ME - why was it never used?

[Dechi]

@Orca I don't disagree with what he is saying. I think it depends on every case and it's a judgment call. He said to me that people like me (moderate) usually don't get better, so I suppose these would apply to milder cases.

He's also said he would test me again in 2 years to see if I am improving and if I am, I would surely be willing to start pushing myself a little, If I felt I could handle it. I mean, I can feel it in my body when I exercise at the moment, it just feels so wrong. If I improved I would know it.

And you know what ? Nobody is perfect and if you want to find things to disagree with any doctor, you will. Dr Hyde is a good man and a good doctor, but he's not perfect. He does a lot for his patients and he goes way beyond his duty. To me that's what matters and I am so grateful for him. Without him, I would be alone in my medical battle.

 

[Orla]

@Orca I don't know his position about cancer or thyroid problems but one thing is for sure, the way he works is by sending his patients to the best specialists in the world, so I would think anyone diagnosed for cancer under his care would have gotten the diagnosis from a specialist.

They might technically have abnormal cells but if you look at the Gilbert Welch stuff [I understand if you don't have energy], this is not necessarily of clinical significance.

This is a good response to Hyde's position on Thyroid "cancers" http://www.vitality101.com/health-a-z/Cancer-thyroid_cancer_and_cfs

from that:

"Dr. Meryl Nass discussed with Dr. Hyde at the Florida IACFS meeting in January 2007 that autopsy data (she learned this at a Harvard endocrinology CME in 2006) showed a 4% rate of thyroid cancer in the general population, but mostly it did not seem to metastasize or grow large and she later sent him the info.

In addition, my colleague and wonderful CFS expert, Paul Cheney, noted when I found the thyroid cancer study to be faulty that:

"Jacob, I agree with you. I have had two cases of thyroid cancer in more than 5,000 cases seen over 20+ years , one just 3 months ago to make two. Interestingly, I just read an article last month that reported the incidence of thyroid cancer in situ using autopsy findings in those over 50 is 100% (Harvard study entitled "Living with Cancer"). Therefore, if you live to be 50, you will have a 100% chance of having carcinoma in situ in one or more places but thyroid most of all. The article went on to describe the angiogenesis and anti-angiogenesis factors that are in equilibrium that keep cancer from being a "disease." Robert Good's original hypothesis that we all have cancer and may never die of it is correct."

Overall, I would take this study with a grain of salt as an increased risk of thyroid cancer has not been seen clinically over decades of follow up. It is possible that biopsy changes are seen which look like thyroid cancer in an early stage, but I have not seen much thyroid cancer in my 3,000 CFS patients over the last 30 years and I suspect they would have shown by now. I am concerned that the risk of wide scale thyroid removal outweighs the benefits and would still use standard diagnostic approaches (instead of needle biopsies routinely for no other reason). In his group of 6 thyroidectomies, one patient had a heart attack after surgery and others had vocal cord and other complications. It was not clear what degree of thyroid cancer was "confirmed on pathology." http://www.vitality101.com/health-a-z/Cancer-thyroid_cancer_and_cfs

I was glad that in my case a screw-up worked to my advantage. There was an issue with the first thyroid nodule sample taken so my first sample was read as inconclusive. I was sent for another test. This was read as normal, which turned out to be an error (I ended up, weirdly, as one of the patients in a controversy at a local hospital, about the misreading of some biopsy samples). I was told then that the second sample should have been read as inconclusive, but by that stage the nodule had shruken so I did not pursue this further as I felt it might be a red-herring. My thyroid blood test results are always normal.

Weirdly for me, a screw-up at a local hospital may actually have saved me unnecessary surgery . For once someone's incompetence worked to my advantage.

 

[Orla]

Hi Dechi, this is a discussion though about his definition, and why it is not more widely used, and I can see a few reasons for that. I don't doubt he is ok with some of his individual patients.

I know of another doctor who I got the impression was quite good with his own individual patients, and cautious with them, but I felt he was doing potentially harmful stuff politically (I'm not naming them).

I'm not actively looking for faults in definitions but some of the problems with this definition jumped out at me when I first read it. We should really read things like this with a critical mind anyway, as otherwise we would just go along with anything any doctor wrote (which would be very confusing where they disagree!).

I help run a patient group so I read things in a particular way, wondering if this is useful for patients in general? If this was given to doctors what would they take from it?

There is no 100% perfect definition I think. I think it is useful to discuss the pros and cons of any definition. I would also be in favour of a very tight, but defined research definition, but I think it is ok to have a slightly looser (not Oxford loose!, more Fukuda or Canadian) definition in a clinical setting (or maybe something like post-viral fatigue syndrome as an initial working diagnosis for the first few months) as otherwise you leave loads of patients left out with no help or advice. Admitedly you also don't want to run into the situation you now have in the UK where too many people with fatigue, but without classic ME symptoms, are being diagnosed with CFS.

Some people want very very restrictive clinical definitions which I think is why the Nightingale definition appeals to them, but they are not thinking of how this might be implemented in practice. A SPECT Scan for everyone would be unrealistic both in terms of access to these scans, but it also raises issues about how the scan would be read. And what do you do with ones which are read as normal but the patient does seem to have ME?

I don't think this situation will be 100% satisfactory until we have good diagnostic testing.

 

[Dechi]

@Orla maybe you're right and his definition is too simplistic. But honestly I've read hundreds and hundreds of papers and tentatives of a definition and his was always the one that appealed the most to me, even when I wasn't his patient. It has the advantage of being clear and easy to understand and he's got 30'years of practice behind him to show that it works.

To answer your question, if a SpECt scan doesn't show hypoperfusion, so no ME, it doesn't mean the person isn't severely ill. It just means we need to keed looking for other very serious illnesses to treat this person.

I agree SPECT scans aren't an easy thing to do routinely and not everyone would have access to them. Research is leaning towards simple blood tests to diagnose the illness, of which Dr Hyde's ME patients would surely be a sub-group of, and that is certainly more preferable to just about anything else, except maybe peeing in a cup !

 

[JollyRoger]

@Oria do you have pem despite a negative spect?

Nightingale wrote in his paper that ME has a sudden onset. Other criterias:
Early Findings: (a) severe
headaches of a type never previously experienced;
(b) these are often associated with neck rigidity
and occipital pain; (c) retro-orbital eye pain; (d)
migratory muscle and arthralgia pain; (e)
cutaneous hypersensitivity

And the hallmark: post exercise malaise
Cfs has no pem as a criteria.

I had a progressive onset and I have pem.... so, do I have both??
I never had headache or retro orbital eye pain.

Another question:

SPECT imaging of the brain: comparison of findings in patients with chronic fatigue syndrome, AIDS dementia complex, and major unipolar depression.

In this study they found lesion of the brain in me.
But why do some patients get a full remission?
And why proclaims Davis that the disease is reversible when ME is a "destruction of the brain"?


Is not the low blood volume the cause of the hypoperfusion?
How does this spect result match with mitochondrial dysfunction?
Would be a MRI not enough?

I don't like the idea of a damaged brain.... living with this stupidity the rest of my life is a nightmare.... before this illness I was a mastermind :-(

 

[Dechi]

@JollyRoger

CFS is not an illness, you can't have it (according to the Nightingale definition). If you don't have ME, it means you're caught in the CFS umbrella, so you have another illness, most probably treatable, that needs to be investigated some more.

Lesions to the brain shown on brain spect are reversible. They are caused by insufficient blood volume. Sometimes after a few years, a second brain spect will show a perfect brain ! That means that whatever was causing the hypoperfusion has been removed. You can have hypoperfusion to your brain and have a perfectly normal MRI, with no deterioration of the white or gray matter. They don't go hand in hand.

So don't despair. ME is not the destruction of the brain at all !

 

[JollyRoger]

Ah... now I feel relieved - thank you.
I'm a newbie and despite being bedridden I'm determined to be in perfect health again one day.

This would be also in harmony with the finding of the mitochondrial dysfunction because oxidative stress produces neuroinflammation or do I misunderstand something?
what's the egg and what's the chicken in this case?

 

[Dechi]

@JollyRoger I am no specialist, I'll let others chime in. But according tp Dr Hyde and Dr Chia, enterovirus infections are the main cause of ME.

 

[Orla]

@Oria do you have pem despite a negative spect?

Nightingale wrote in his paper that ME has a sudden onset. Other criterias:
Early Findings: (a) severe
headaches of a type never previously experienced;
(b) these are often associated with neck rigidity
and occipital pain; (c) retro-orbital eye pain; (d)
migratory muscle and arthralgia pain; (e)
3``

And the hallmark: post exercise malaise
Cfs has no pem as a criteria.

I had a progressive onset and I have pem.... so, do I have both??
I never had headache or retro orbital eye pain.

Another question:

SPECT imaging of the brain: comparison of findings in patients with chronic fatigue syndrome, AIDS dementia complex, and major unipolar depression.

In this study they found lesion of the brain in me.
But why do some patients get a full remission?
And why proclaims Davis that the disease is reversible when ME is a "destruction of the brain"?


Is not the low blood volume the cause of the hypoperfusion?
How does this spect result match with mitochondrial dysfunction?
Would be a MRI not enough?

I don't like the idea of a damaged brain.... living with this stupidity the rest of my life is a nightmare.... before this illness I was a mastermind :-(

Hi Jolly Roger, yes I have PEM and delayed recovery from exercise. I had sudden post-infectious onset. I did have a lot of headaches in the early stages but I don't remember any eye pain (but I do have other eye problems on and off). I don't think eye pain is a common problem, at least I have not seen it mentioned as a prominent issue in ME groups.

One issue with SPECT scan is that, as far as I know, it measures a ratio of blood flow in one part of the brain in relation to another part. I wonder if someone had overall reduced blood flow but not specifically worse in one area or another of the brain, would that person have a normal reading of a SPECT Scan? It seems a bit weird that I would have low blood volume (and brain-fog) but have a normal SPECT Scan reading. Of course I never got a copy of the scan itself so didn't manage to get a second opinion on it. Maybe I have some super-powers that I manage to get the blood to my brain ok ?

Someone did tell me that the blood flow issues are seen in depression and I think they were implying that it could be ME patients with depression that could be more likely to show up with an abnormal SPECT Scan. I was not depressed when I got the scan or before it.

There might be some brain-damage that we will never fully get rid of, but some people get a lot better after a few months or years of illness, which implies that a lot of the effects of the illness are potentially reversible. I don't know how long you have been sick, but I feel that over time a person can develop some strategies for dealing with the problems. I also wonder if in some ways our brain heals to some extent to allow us to do things, maybe differently, or using some other part of our brain? I don't really know how to describe what I mean, and a relapse could put paid to any progress, but I feel myself that some of the feeling of the early "chaos" has died down for me. I know some of this is because I have gotten more used to the illness, I know my strengths and weakness as the new me, I have adapted my life to get around some of the problems, and I pace myself better, but I do wonder if some of it is actually a degree of healing in terms of mental function?

 

[Dechi]

@Orla Spect scan showing hypoperfusion in ME patients have nothing to do with depression. According to the Nightingale definition of ME, you don't have ME if your brain doesn't show hypoperfusion. All of Dr Hyde's ME patients have hypoperfusion. The lack of blood volume is not found evenly in all parts of the brain ; it varies from patient to patient, and yes, you can tell in what areas the person is going to have problems by looking at the spect scan. The scan also shows the severity of the injuries, ranging from mild to severe.

Spect scans are powerful tools to assess the degree of the severity of injuries to the brain, amd depression has nothing to do with it.

If you had a regular Spect scan that wasn't ordered by an ME specialist for the purpose of finding hypoperfusion, then it won't show anything. It has to be done on a certain type of machine, with a certain protocol and contrast. i am not sure your understanding of the scan is correct either. The ones done at Nightingale clinic compare the brains to brains of normal elderly people.

 

[Orla]

<According to the Nightingale definition of ME, you don't have ME if your brain doesn't show hypoperfusion. All of Dr Hyde's ME patients have hypoperfusion.>

Yes all ME patients by his definition have an abnormal SPECT Scan as he wouldn't diagnose them with ME without it. This is circular reasoning though and doesn't prove the case.

There could be an issue with some off these tests that if you do them on a good day they are read as normal, or fairly normal, and that if you do them on a bad day that they are abnormal, so one point in time might not be sufficient to get a clear picture (but it could be too expensive to do the scans twice). I don't know of any other specialist who insists on an abnormal SPECT to diagnose ME, and I see no reason to assume Hyde is right and that all these other doctors are wrong.

That doesn't mean that results from research into brain scans isn't interesting as it might show an overall trend in an abnormality even if every case doesn't have it all the time (e.g. I think there is a tendency for C-reactive protein levels to be raised in ME by comparison to controls, but this doesn't mean that every person with ME will always have a raised level).

It would help if he would publish his definition in a medical journal, with X amount of consecutive cases looked at (and I think to be convincing he would have to have an alternative believable diagnosis in cases meeting the Canadian criteria but having a normal SPECT Scan), so that other doctors and scientists could examine his argument. Ideally this would involved some other well known authorities sending patients to him for an assessment to see if they came up with the same diagnosis.

Unfortunately there will always be some degree of uncertainty in an ME diagnosis, until there is a diagnostic test, and even then it could be hard to get a test that will pick up 100% of cases (this is the case with some conditions where it is based on a mixture of tests and the case history). SPECT Scans are neither sensitive or specific when it comes to ME, in my opinion, so do not meet the basic criteria for a diagnostic test so should not be used as such (even if having an abnormal scan might be useful in other ways).

I am just putting an alternative view out there as it is important to note that the definition is just the opinion of one person. He is wrong about the thyroid cancer issue (and sounds like he refused to change his stance even after his errors were pointed out to him) so there is a possibility that he is wrong about other things.

The definition reads a bit like someone who has a pre-existing fairly narrow (not necessarily wrong) opinion, based on a select group of patients, and then comes up with a definition that only a very tight cohort of patients will meet. He is a proponent of the early idea that ME is a result of an enterovirus. But I think ME might also be triggered by other infections. I have seen cases triggered by vaccinations (and other things) that I would not have been able to distinguish with ME triggered by a stomach bug if looking at their symptoms and how they were affected. Can we really categorically say those people don't have ME on the basis of an early theory about ME? Enteroviruses might be the main trigger for ME but it doesn't mean that there are no other triggers.

 

[Dechi]

@Orla I won't try to convince you, I think we all need to find what works the most for us. No one has the answer as of now, so we have to wait. And until then, I wish everyone would find someone as capable and caring as Dr Hyde to help them.

I believe in his approach and definition, although it might need to be widened to include more sub-groups. I also believe in the accuracy of spect scans, as it can't be a coïncidence that hundreds and hundreds of patients all happen to have hypoperfusion and fit the ME profile at the same time. I should have added that the second criteria to get the diagnosis is trace of enterovirus in the gut (gastric biopsy). Dr Chia is the one analysing those for him.

Anyways, like I said, for now, our opinions are just that. Opinions. Hopefully everything will be revealed in the coming years.

 

[JollyRoger]

Why only his special SPECT is accurate enough to detect this damage?
Why do we need D.Chias special and expensive tests or biopsies to detect entero?
If you don't have enough money or you live thousands of kilometres away from this doctors you never get a diagnosis.

And even if you have a proved enteroinfection and hypoperfusion - than what??
There's no "big" research like Dr.Davis and co.

And no treatment despite a try with equilibrant.

It's the worst case of the whole ME thing.
The majority of ME patients can't afford therapies like Ampligen or interferon.

----

Can it be that ME is a cause of CFS and the criterias are wrong distributed?
That every infection like EBV can be the cause of CFS (with the hallmark PEM) and ME (Entero) is one of the causes?

In this picture they show the reason for fatigue in autoimmun diseases and neurological diseases.
They also show hypoperfusion and neuroinflammation.

 

[Dechi]

Why only his special SPECT is accurate enough to detect this damage?
Why do we need D.Chias special and expensive tests or biopsies to detect entero?
If you don't have enough money or you live thousands of kilometres away from this doctors you never get a diagnosis.

And even if you have a proved enteroinfection and hypoperfusion - than what??
There's no "big" research like Dr.Davis and co.

And no treatment despite a try with equilibrant.

It's the worst case of the whole ME thing.
The majority of ME patients can't afford therapies like Ampligen or interferon.

----

Can it be that ME is a cause of CFS and the criterias are wrong distributed?
That every infection like EBV can be the cause of CFS (with the hallmark PEM) and ME (Entero) is one of the causes?

In this picture they show the reason for fatigue in autoimmun diseases and neurological diseases.
They also show hypoperfusion and neuroinflammation.

Dr Hyde's definition of ME and way of testing is one amongst others. You don't have to have the SPECt scan to prove it. And you don't need the gsstric biopsy either. There are other ways.

For me, I chose to go with Dr Hyde and do it his way. Once we find out what I am infected with through Dr Chia (hopefully he'll find something, if not I'll have to start over to find a cause), then we can try treatment. Antivirals have been known to work for some people, so it's the way I want to go. I would also try Equilibrant if It proves right in my case.

I live far away from Dr Chia, my samples are being sent by mail. So if you want to go this way too, distance is no problem. And you wouldn't even have to do the Spect scan to work with Dr Chia.

You can choose your own route, both for ways to prove your disability, if you have to, and find treatment, if you wish to.

 

[RogerBlack]

I note that the definitions of CFS are adequate in that they can be used to select a patient population who >66% of which respond to Rituximab, in a significantly positive manner. (way more than 'normal disease variation).
That sets a sharp limit on how bad these definitions can be.

 

[PhoenixDown]

Primary M.E. is an acute onset biphasic epidemic or endemic (sporadic) infectious
disease process, where there is always a
measurable and persistent diffuse vascular
injury of the CNS in both the acute and chronic phases. Primary M.E. is associated with immune and other pathologies.

The Nightingale criteria claims ME is an infectious disease but that hasn't been proven yet, I mean may be it's true for a sub group of patients but nobody knows for sure.

 

[JollyRoger]

When I scroll through his website I get goosebumps!!!!

Permanent damage....irreversible damage on the brain....
It's sounds like a death sentence.
I prefer the "it's totally reversible" prophecy of Davis.

No idea which one is right.

 

[Dechi]

The Nightingale criteria claims ME is an infectious disease but that hasn't been proven yet, I mean may be it's true for a sub group of patients but nobody knows for sure.

The definition says primary ME is caused by enteroviral infections, but can also be caused by parvovirus and exposure to chemicals if I remember correctly. So it includes many causal factors.

 

[Hip]

Dr Chia's view on SPECT scans:

QUESTION TO DR CHIA: Do you think a SPECT scan and interpretation by Dr Byron Hyde would be useful in assessing the extent of potential brain damage?

DR CHIA'S ANSWER: Does not think it would be helpful because SPECT scans are not conclusive and low blood flow can mean many different things including depression. Does not think enough studies have been done connecting SPECT scans to CFS/ME

Source: here.

 

[JollyRoger]

Yeah....but in cfs there's a unique pattern of hypoperfusion ... in the brain stem.
There's no disease that has a brain stem hypoperfusion .... only post polio patients.


Two studies using SPECT have documented that decreased
brain stem metabolism, and by inference decreased activity of RAS
neurons, was the only physiological finding differentiating subjects
with CFS from healthy controls and subjects with depression or
neurological disease