Confirming a Diagnosis of ME – Brain Scans

Confirming a Diagnosis of ME - Brain Scans

Posted: 03 August 2020
Updated: 02 September 2020

Why Do Brain Scans?

Encephalomyelitis means: inflammation of the brain and spinal cord.
The World Health Organization coded ME as a neurological disease in 1969.
Research evidence demonstrates that ME has both structural and functional brain consequences including reduced resting brain blood flow, differing connectivity among brain regions, alterations of whole brain metabolism, reduced gray and white matter volume, increased presence of white matter lesions, increased neuroinflammation and altered brain function during cognition. See links to some brain research in the introduction of “Neural consequences of post-exertion malaise in ME/CFS”.
The ME International Consensus Primer (based on the International Consensus Criteria) was written in 2012 by a group of ME experts who had more than 500 years combined experience with myalgic encephalomyelitis. The Primer indicates the importance for brain scans to rule out other conditions as well as testing that can help confirm an ME diagnosis. Page 4 includes SPECT scan testing info to look for areas of hypoperfusion (reduced amount of blood flow) which are characteristic of ME.

Understanding ME & SPECT Brain Scans

SPECT scans measure how blood flows into the brain at a point in time. Blood flow is impacted by many factors including diet, lifestyle, medications, age, and genetics. This is different than an MRI which looks for any abnormalities in the structure of the brain. Another option for testing is a functional MRI (fMRI) which looks at the brain in action (used mostly in research) and not available to anyone who has metal implants. Another thing to consider is an fMRI does not emit radiation, as magnetic forces are used to collect information. In a SPECT scan, the patient is exposed to a small amount of radiation.

More information about SPECT scans can be found in Dr Hyde’s writings from the Nightingale Research Foundation. The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.) (2016) booklet with information presented at the IACFS/ME Conference Fort Lauderdale, Florida and Cornell University (2016) has detailed SPECT information starting on page 11.

A Sept 2019 thesis paper titled Quantitative Electroencephalographic Assessment of ME/CFS: Support for a Novel Diagnostic Protocol by Andrew E Pellegrini discusses the findings of Dr. Hyde and showed qEEG testing could also be used to find abnormalities in ME patients.

My Experience Getting a SPECT Scan

In June 2020, my husband took me for two consecutive SPECT scans; a “thinking” scan on day one and a “resting brain” scan on day 2.

Working with CereHealth® personnel at CereScan®, who answered my multitude of questions, helped me feel confident this was a worthwhile endeavor to get the answers about the changes in cognition I had seen as a result of acquiring myalgic encephalomyelitis in 1989.

Preparing for the Scans

A lengthy history/symptom questionnaire was done via my home computer. Options for filling out the questionnaire include online, pen and paper, or verbal (where CereHealth staff walks the patient through each question). Filling out the form can be done in multiple sittings.

A cognitive assessment was taken using my home computer. This had to be done all in one sitting and consisted of several different kinds of memory and cognition exercises.

NOTE: There is a loud bell sound at the beginning which shocked me as I wasn’t expecting it and I had my volume set too high. An improvement to their test would be to do a volume level test to make sure it’s at a reasonable volume and a notification so the sound is expected. The results from that showed very low scores in psychomotor speed, reaction time, simple attention and motor speed. Also, below average composite memory and verbal memory were noted. Those findings coincide with my daily experience.

Shortly before leaving for the scans, I did an intake interview over the phone. This covered making sure I knew what to expect and a chance to get any last-minute questions I had answered.

The day before the test, I stopped some medications that would interfere with the scans and was given routine instructions to avoid caffeine, alcohol, nicotine and marijuana.
NOTE: All of my work with CereHealth in Colorado was done via phone/email.

Getting the Scans

CereHealth is based in Colorado but has coordinated with other outpatient radiology facilities to perform the test to their specifications. As everyone’s travel experience will be different, I won’t go into those details other than to say that traveling to Florida during the COVID-19 outbreak was a daunting experience, but the lab where I had the test done was making good efforts to keep everyone safe.

Day 1 – Scan at 8 am. Travel time to the office was about 40 minutes so we gave ourselves an hour to get there. Several warnings were given in the paperwork that the radiopharmaceutical injection used is time sensitive and being late to the appointment could result in not being able to perform the test and me being charged for the radiopharmaceutical.

The infusion is technetium Tc99m exametazime. I am highly reactive to most things and was concerned despite reassurances that others have had no issues. I felt no reaction at all to this injection. As is common for me, I tasted the saline used to prep the infusion line but, other than that, noticed no effects at all.

DAY 1 – CONCENTRATION – Process Details

Explain and set up IV line
Give electronic tablet and have patient start the test activity
Wait 5 minutes and inject Tc99M
Wait 10 minutes and take tablet away
Scan after 1 hour post injection (scan takes about 20 minutes)

DAY 2 – BASELINE (Resting brain) – Process Details

Explain and set up IV line
Put headphones and eye mask on
Wait 15 minutes to inject Tc99M
Scan after 1 hour post injection (scan takes about 20 minutes)

As can be seen from the (first) picture, I was allowed to wear my face mask for the procedure. This is nothing like an MRI. There is no thumping. The sounds I heard were closer to the sounds one would hear getting a dental x-ray; movement of the machine and then silence with occasional mechanical clicks.

As I understood the importance of not moving during the scans, I spoke with them about my involuntary muscle twitching and was pleased to learn they had a head strap as well as a Velcro body wrap that would help me to stay still. The head strap was comfortable across my forehead and the body wrap covered my upper body area using Velcro so it could be tightened to comfort. It was not uncomfortable and I felt more secure knowing that if I had a muscle spasm it was unlikely to affect the scans. A light blanket helped keep me from getting chilled during the procedure.

Here is the list of all of the partnering clinic locations CereHealth uses at this time:

Littleton, Colorado (headquarters)
Sheffield, Alabama
Scottsdale, Arizona
Tucson, Arizona
Encinitas, California
Laguna Hills, California
San Francisco, California
Naples, Florida
Ocoee, Florida (Orlando area)
Tampa, Florida
Arlington Heights, Illinois (Northern Chicago)
Metairie, Louisian
Monroe, New York
El Paso, Texas
Houston, Texas
Dallas, Texas

According to CereHealth’s clinician:

“CereScan’s affiliated clinics are located in areas where the GE radiopharmaceutical is accessible. We are limited by this accessibility and may not be able to partner with clinics in certain states/regions. Our sixteen clinics follow CereScan’s specific imaging protocols and their nuclear medicine technologists/staff are trained by CereScan’s Chief Nuclear Medicine Technologist.”

Test Results

The SPECT scans are read using CereMetrix®, which is an FDA-cleared radiology tool for SPECT analysis. Results are expected within about 2 weeks. These were emailed to me through a HIPAA secure email service. They were also sent to my doctor.
My results: “The nature, location, and pattern of these abnormalities is primarily consistent with the scientific literature pertaining to traumatic brain injury (TBI).”

An option at CereHealth after getting the lab results is to do a consultation which may not be covered by insurance.

The consultation included the overall understanding of how the scans were read. It was noted that the interpreting physician who read the scans has many years of experience and was not given my history or diagnosis prior to the reading; thus, doing a blind reading. He did review my medical history after the reading to provide context to the information found. This radiologist has a lot of experience and has testified as an expert witness.

As part of the video chat consultation, the clinician walked me through the scans using the software used to read the scans while I followed along on my computer screen. She was able to move images of the brain around and show inner regions and discuss the areas that showed abnormal blood flow. The interpreting physician read the scans using 2 points of deviation from normal. During the consultation, the clinician was able to alter the program to see my scans at 1.65 deviation of normal which expanded the areas of abnormality. (2 points of deviation are normal for reading brain scans.)

The findings helped to explain some of the following symptoms I deal with regularly: disorientation to time/place, headaches, muscle pain, confusion, difficulty with concentration, distractibility, disorganization, visual processing, depth perception, difficulty learning new things, losing things, problems with language/word finding, as well as long and short term memory problems.

NOTE: This consultation does not include a written report, so it is important to take good notes to look back on if needed.

CereHealth can provide a set of images (which are also included on your imaging report), and a CD of the raw data at your request. They can send the SPECT information to your neurologist, and their clinician can provide support if they have questions.

Why 2 Scans?

The resting scan is the normal method and that is the scan used to compare to a population database. The “thinking” scan has no population data to compare to so is only compared to the patient’s resting scan.

The following is a quote from the CereHealth clinician: “A normal, healthy response to the concentration task means that blood flow increases to the brain when it works harder. (Think about it this way: when you are running, your heart pumps faster and more blood flows through the heart. Same with the brain, but instead of running, you are thinking).

The following is a quote from the CereHealth clinician: “A normal, healthy response to the concentration task means that blood flow increases to the brain when it works harder. (Think about it this way: when you are running, your heart pumps faster and more blood flows through the heart. Same with the brain, but instead of running, you are thinking).

In cases where TBIs or other neurological conditions are present, we will actually see the opposite response, where blood flow decreases in the brain during concentration. Basically, the harder you ask your brain to work, the more it shuts down. This is a paradox (it is doing the inverse of what it should be doing) and the brain is deactivating (i.e. working less). This deactivation can come from a TBI, toxic injury, and is a common finding in a person with ADD/ADHD.”

My scans showed this abnormality as can be seen in this comparison between my brain at baseline and during concentration.

Comparing My Results to the IC Primer

Part of the consultation explained the difference between Segami software (what is shown in the IC Primer) and the CereMetrix software. CereHealth previously used Segami software so they have experience to discuss comparison. Some limitations to Segami include an inability to share the scan technology for others to review the scans as well as Segami did not have the details in the subcortical area of the brain that Ceremetrix provides. (Info on Segami from 2018 so that may have changed since then.)

The top picture on the right, from page 4 of the IC Primer, shows a white area. That area is a lack of information which my scans included. My scans did not show the same pattern of blood flow issues as shown in the Primer, but it did show some areas that overlapped.

“SPECT imaging can identify what is called a “toxic/hypoxic encephalopathy”. This type of neurological condition can result from a single exposure and/or chronic exposure to an environmental toxin such as carbon monoxide, mold, heavy metals, Lyme disease, HHV-6 (and other viruses) and even substance abuse (alcohol, cocaine, heroin, etc.). This process can also occur after a hypoxic event, where the brain was deprived of oxygen (such as a near-drowning experience, problems with anesthesia, anaphylaxis, etc.).

A toxic/hypoxic encephalopathy in SPECT imaging is described as a “patchy, diffuse, scattered pattern” of reduced blood flow. In this type of injury, almost all brain areas can be affected, including the subcortical structures. In a traumatic brain injury pattern, we see what are called “focal, dominant, or more specific” areas of reduced blood flow. In many cases, the mechanism of injury relates to where the radiologist sees damage in the brain. For example, a football player who makes helmet-to-helmet contact and has a concussion/TBI may show a focal area of reduced blood flow in his forehead region (frontal lobe), and other parts of the brain may appear unaffected.” The source for this information is the clinician at CereHealth.

Cost

Here is the information for insurance:

SPECT imaging falls under radiology
CPT codes:
- 78803 – Radiopharmaceutical localization of tumor or distribution of radiopharmaceutical agent(s); tomographic (SPECT)
- A9521 – Technetium tc-99m exametazime, diagnostic, per study dose
- 78835 – Other Diagnostic Nuclear Medicine Procedures
- 99205 – New Patient Office or Other Outpatient Services
- 90889 – Other Psychiatric Services or Procedures

CereHealth indicated that one resting scan should be sufficient to see any abnormalities that might help diagnose ME. I found the comparison between the two provided information that may prove valuable. The current cash rates for this procedure are:

$50 Cognitive assessment (computer from home – optional)
$50 Psychiatric Screen (completed during the intake phone call – optional)
$2,600 1 resting brain SPECT scan – reimbursable by some insurance (Cerescan staff can help look into what is covered)
$4,400 total for two scans (resting and active) (Second scan may need follow-up paperwork to get insurance to cover cost and they may not cover this second scan.)
$150 Consultation (optional)

Was It Worth It for Me?

Prior to this test, I had only one other brain scan which was an MRI to rule out Multiple Sclerosis. There were no findings noted by the neurologist on the MRI. Because ME can be mistaken for MS, it is important early in the diagnosis process to have MS ruled out.
Confirming an ME diagnosis is a long process. Getting these SPECT scan results, even though it was 30 years since onset, gave me and my medical team a better understanding of what was happening and verified my limitations were based on biological issues and had nothing to do with my attitude.

I am grateful that my scans could also benefit future research. Early in the process I was excited to learn that CereHealth has conducted multiple studies and participated in projects with various Contract Research Organizations. CereHealth’s software has the ability to gather a wealth of deidentified patient data to run correlational analyses and quantify SPECT imaging data. Their team has the connections to quickly mobilize an active or retrospective study to further examine complex neurological conditions. They encourage patients to authorize the release of their health information into their deidentified database so these studies may be performed to contribute to the medical field and benefit other patients in the future. I gave permission to have my scans available for future study.

Confirming an ME Diagnosis is a Long Road

One of the benefits of the IC Primer is it provides a flashlight in the dark forest we all wander through trying to find answers. Using the IC Primer has provided me insight into the symptoms and disease process to feel confident I have been properly diagnosed. It has also given me management and treatment tools to improve my quality of life.

There is nothing easy about living with ME, but making sure our medical team is using the most accurate and up to date information and proper testing can significantly improve quality of life for those dealing with ME.

Colleen Steckel – Sudden onset Myalgic Encephalomyelitis August 1989
Disclaimer: I was given no discount or financial gain from CereHealth. This is my personal experience and not to be considered medical advice.

Previous Comments:

Geoffrey Brown – 8/7/2020 02:46:02 pm
i had 3 of these scans over a period of 32 years -my question is was the results used by your g.p at anytime and did he-her understand them,did they result in better treatment in any way.thank you for the detailed report it helps me as a referral tool as my short term memory is completely non existent
Reply – Colleen Steckel – 8/7/2020 05:55:09 pm
It is too soon for me to know whether these results will lead to better treatment. Up until now it has been difficult to get a neurologist to do more than a cursory look to rule out MS.
I am hopeful this will give me the information I need to have a knowledgeable neurologist taking a deeper look.

Jane Mostowitz, president, Houston CFIDS (ME/CFS) Association – 8/7/2020 05:15:13 pm
For Medicare, Medicaid, or combination of both Medicare and QMB you have to go to Colorado to have their doctors read it and Medicare Medicaid or combination to pay for it. They have you fly in on Saturday or Sunday and fly out if I’m not mistaken Tuesday or Wednesday. I haven’t had the funds for that. While they have an off-site facility in Houston and other off-site locations around the country with radiologist who read the reports and trained by ceri-scan they don’t have the knowledge that the Colorado doctors do. Just wanted everyone to be aware. If you call ceri-scan they’re excellent on explaining everything to you in Colorado or even online. Thank you for the excellent explanation of how the testing Works you’re very well spoken.
At one time I was told I have frontal lobe atrophy from combination of accidents, gymnastics, Etc. You give an excellent explanation of what they do. The off-site locations do not explain enough to doctors. It’s my understanding that ceri scan has a consult fee if their doctors speak to your doctor after the testing. You’d have to check that it’s been a couple of years since I’ve talked to them. They help you in any way they can with information.
Reply – Colleen Steckel – 8/7/2020 05:58:29 pm
I’m not sure if things have changed. I did my scans in Florida (I wasn’t comfortable flying to Colorado due to COVID19). There were some insurance benefit to going to Colorado, but the travel cost wiped out those benefits.
I understand the person who read my scans is the same person who reads them no matter where they are done.
I’m sure everyone’s insurance is different, so it is something to look into. CereScan was very helpful throughout the process.

Sam Houston – 8/9/2020 01:14:01 pm
I’ve had this scan and it was helpful in getting disability as my GP, physiatrist and a forensic neuropsychologist accepted them as evidence of brain damage. However prehistoric neurologists only rely on MRIs unfortunately. These SPECT scans are mostly more useful for neuropsychologists to corroborate their findings as well as forensic investigations for litigation and disability purposes. This scan helped me get on disability.
On another note your explanation of the IC primer is confusing to me. What exactly is an IC primer. No one at Cerescan explained that to me. And are they no longer using Segami? That’s what they used for my scan.
Reply – Colleen Steckel – 8/11/2020 12:07:23 pm
The International Consensus primer is a guide for physicians which explains diagnosis, testing, management and treatment of myalgic encephalomyelitis.
It also covers a lot of the science that explains the abnormal findings seen in ME patients. This is a link directly to the primer. There is more explanation about this primer on pages i and ii.
I wouldn’t have expected CereScan to bring up the IC primer as it is more for physicians and not specifically for brain scans. But it does have brain scan information on page 4.
Correct they are no longer using Segami. I believe it’s been a couple years since they used Segami and now use CereMetrix software.

Deana Kelley – 4/16/2021 09:44:08 am
Hello Colleen, your blog was captivating. Amazing explanation about the blood flow decrease when we need it the most. Will this understanding help your health team provide treatment for TBI ? I have a CereScan available not far for me (Dallas). I think what you’ve discovered is far above the imagination for the ME community. Thank you for your encouragement in all that you do.