SPECT scans: can they be used to diagnose ME/CFS?

Split from this thread

I would be interested in getting to the bottom of whether SPECT scans can be used to positively diagnose ME as Byron Hyde has claimed.

When I looked at the full text of:
https://www.ncbi.nlm.nih.gov/pubmed/8542261

What it reports is an average difference in one area. No attempt is made to look for a threshold that might be used for a diagnostic test or report the sensitivity and specificity. To give an analogy, it is generally accepted that men are taller than women on average. However, any particular threshold won't be particularly strong in terms of saying if one is above a certain height one is male and below it, one is female.

Also I know somebody who attended Byron Hyde in Canada from outside Canada. This involved a huge expense. Despite all the talk from Byron Hyde that SPECT scans are easy to read, he can't do it himself. Byron Hyde never got back to this individual with definitive results from their scan. He was hoping to get an expert in another country to analyse the results, but this never happened.

He also said one needs to be careful how much mental exertion one does before the test as that can affect results. But it didn't seem easy to know when somebody had done too much or not enough mental exertion to affect the results.

It is a pity to my knowledge he has never published any peer-reviewed papers on this topic.

 

Doctors don’t typically read scans, radiologist do, and provide a report that the doctor can read and interpret. If you could provide an example of where Hyde said it’s easy to do we can take a look at that.

Yes, Hyde relies on a radiology expert from South America to take in the DICOM data from the scan and evaluate it using software specially developed for SPECT (Segami Oasis). My recollection is that the South American doctor actually helped develop this software but my memory could be wrong. Yours is an unfortunate anecdote if true, but tells us little more here.

SPECT is not some woo woo technique. It is a legitimate imaging modality and many research universities have machines. It has known limitations in regards to resolution, and there are many things that can influence the results, but these things can all be controlled for and in my opinion there really should be a well funded study done on carefully selected ME patients because I believe it could really help the science on ME.

 

The person who attended him said this to me. I think they said it was in a talk, but perhaps it was to them directly. This was over a decade ago.

 

The pattern on a SPECT scan for depression is specific and different to what’s found in ME/CFS, and is also different for PTSD, ADHD, etc.

More research is required.

 

Yes, this has been compared in at least one study. Depression did not affect the brainstem as ME clearly did.

 

I've not read full paper, but don't think the authors' objective, at this stage, was to try and develop brain SPECT as a specific diagnostic test for ME/CFS. However, it can demonstrate characteristic findings that help support a diagnosis.

The abstract also says "Patients with ME/CFS have a generalized reduction of brain perfusion, with a particular pattern of hypoperfusion of the brainstem." So they are reporting a generalized hypoperfusion of the whole brain also, as well as the region specific findings, in this case the brainstem. I guess the region specific findings are the more remarkable and of potential aetiological significance; generalized hypoperfusion can more easily be dismissed as perhaps a secondary phenomenon due to inactivity, dehydration, reduced circulating blood volume, etc. But I'd say it still has value in showing that this patient cohort is not healthy, there is something wrong.

From:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4228583/

 

Yes, but Byron Hyde does say it can be used as a diagnostic test. And he has said something to the effect that it was 100% sensitive i.e. people should be not given the diagnosis of myalgic encephalomyelitis without abnormal SPECT scans or similar scans.

I remain somewhat sceptical of this until I see good evidence from a group of patients (as opposed to a few select individuals), ideally in a peer-reviewed journal. And more importantly medical professionals will likely be somewhat sceptical without such evidence.

 

Thanks for looking that up. However, as I recall the advice from Byron Hyde wasn't just about during the test, but about postexertional effects in the previous day or maybe day or two.

 

Just to add/clarify: It would be brilliant if SPECT scans could be used as diagnostic tests. So that is why this is important. Alternatively, if it is not true, believing such tests were 100% sensitive could mean that people who have Myalgic Encephalomyelitis get denied the correct diagnosis.

 

We do have great researchers in the field of neuroimaging, notably Dr Jared Younger and Dr Michael VanElzakker and neither of them are pursuing the Spect scan route. I believe they have been asked the question as of why or why not before but my recollection is vague. Something to the effect that there are better tools to achieve their goals.

As an analogy, trying to get convinced that a phone attached to the wall would be better than a cellular phone.

 

SPECT resolution is poor, as compared to something like PET.

ME is pretty clearly not caused by gross anatomical brain issues, at least not ones that will show up on an individual MRI or CT scan. Yes, you can find differences using MRI voxel based morphometry or fMRI looking at large numbers of patients, but this isn’t viable for individual diagnostics as Hyde was interested in.

ME is a functional/metabolic brain disease. This is what SPECT and PET modalities are designed to image in an individual. For the life of me I can’t figure out why nobody has looked at the evidence base of the SPECT research, said huh, that’s interesting, and squirted some FDG in some ME patients and thrown them in a PET scanner. I suppose as usual it comes down to lack of funds.

 

I would imagine the advice is that the patient should do their normal level of activity in the days before the test. If they normally try and do a 4 or 5 minute walk most days, and half an hour cognitive activity, or whatever, they should continue with that, not rest completely. If the subject is healthy the level of activity in preceeding days shouldn't effect the outcome of the SPECT scan. Patients don't want to be in remission, they should be symptomatic but I don't think it's necessary to make themselves very unwell by being active above their usual limits. Just my opinion as a patient, I'm not a medical professional.

 

The Costa et al 1995 study, you referenced, included 67 patients with ME/CFS and reported: "Brain-stem hypoperfusion was confirmed in all ME/CFS patients." So that appears to be quite a remarkable finding really. I've not read the full paper but would be interested to, if you could possibly send me a copy?...

Unfortunately, research using SPECT scans seems to have fizzled out, ME Research UK have summarised 15 brain scan studies, both static MRI and SPECT, from 1992 to 2006 in a table here and say:
"As regards brain blood flow, SPECT imaging seemed a promising technique initially, and areas of low blood flow in multiple brain areas in CFS patients were observed — the work of Ichise et al (3), Schwartz et al (4) and Costa et al (5) was seminal in this regard. However, other studies have had different results, and the value of SPECT imaging technologies for the diagnosis of ME/CFS (or any subgroups within that rubric) remains unproven scientifically."

I don't think it's reasonable to expect any diagnostic technique tested on a cohort of clinically diagnosed ME/CFS patients to return 100% sensitivity, however skillful the diagnosing physicians may be, so I wonder if that could be implicated in any discrepencies between studies...?

 

SPECT Scans were used extensively in the 1990's to both demonstrate the existence of Lyme encephalopathy, and the retreat of the infection after treatment. Here is a study done be Dr. Eric Logigian doing just that. Lest someone think he was outside of mainstream line, here is a study around the same time, also with Logigian, alongside of Allen Steere, the EIS agent who dubbed Lyme disease "Lyme disease":

https://www.ncbi.nlm.nih.gov/pubmed/9409364

https://www.ncbi.nlm.nih.gov/pubmed/2172819

Interestingly, it was considered appropriate and even useful to use SPECT Scans for research purposes, but clinicians were warned against employing them on individual patients.

By 2010, mainstream Lyme disciples were adamant in their demands SPECT Scans be avoided. Only MRI's were to be used.

I inquired to the head neuro guy in Lymedom, but he just stuck to the mantra, only MRI's and serology for diagnostic purposes. I even reached out to Logigian, but he just more or less stuck to the party line.

Personally, I think SPECT Scans demonstrated something was amiss, and they did so fairly conisistently, so that couldn't stand.

 

I asked a radiologist relative of mine about SPECT scans. He said it would take him 40 minutes to set up the scanner which he said was not practical in general. I don’t understand what is involved. He suggested we should focus on other types of scans.

 

Merged thread
Can anyone explain why a small group of ME "advocates" believe that SPECT scans can be used to diagnose ME, and why no one else shares this opinion? I keep seeing people arguing about it, but they're just re-stating their own beliefs without explaining why they think the other person's reasoning is wrong.

 

SPECT scans can be used to demonstrate blood flow in organs, including the brain. It brings to bear 3D imaging of organs functioning. It has been used diagnostically back in 90's but fell out of favor - why, I'm not sure. I think it should be used at least complementary. Personally, I think the reason it fell out of favor is because it did what it was supposed to: it demonstrated problems in patients that other imaging technologies could not, and this did not sit well with some people.

 

Byron Hyde made loads of claims about SPECT scans and that they have 100% sensitivity with regard to the diagnosis of ME i.e. if there is no abnormality, you don't have ME. But as far as I know, he never published anything in a peer-reviewed paper.