Recently in Australia, CFS has been given some coverage in the mainstream media due to the plight of CFS sufferer Theda Myint.
Her story can be found here: http://www.watoday.com.au/wa-news/thedas-desperate-fight-against-a-chronic-killer-20100301-pcvv.html
Her story contains striking similarities to my own story
- We were both on the brink of starting our new, dream career before developing CFS
- We are both housebound and ultimately bedbound
- We are both unable to speak for more than a few seconds without getting fatigued
- We are both sensitive to lights and sounds
- We both attempted a quasi exercise regime (I myself tried Graded exercise therapy) and deteriorated as a result of the quasi exercise regime
- We have both deteriorated recently to the point of being practically bed bound. (Theda seemed to deteriorate suddenly approximately 1 year ago, while I have gradually deteriorated over the past 3 years)
- We both only leave the house to venture to the doctor’s surgery. We both crash as a result of this exertion in leaving the house.
- We are both Australians with severe CFS. Theda lives in Western Australia, while I live in the neighbouring state of South Australia.
Theda’s family fears that she is on her deathbed. I mention Theda’s story because she is currently undergoing multiple tests to identify abnormalities to treat. Many of these tests are available only overseas. A list of tests that will be conducted on Theda can be found here: http://www.mecfswa.org.au/UserDir/Documents/treatments.pdf
After spending 5 years trying different treatments, none which seem to be effective, I have become more interested in various CFS related tests. The diagnosis of CFS is commonly arrived upon as a result of excluding other medical conditions that have similar symptoms. This is generally done by having an array of blood tests and urinalysis’ done. These are typically performed at local laboratories that don’t specialise in specific and esoteric testing. Like many other CFS sufferers, these standard tests have come back normal for me.
Some CFS ‘specialists’ and CFS treating GPs don’t perform any further tests on CFS patients beyond these very basic ones. Personally, I am a huge proponent of esoteric medical tests for CFS patients. If an aberration to the normal range is found, treatment can be tailored appropriately. This may not provide a cure however may alleviate some symptoms. These secondary tests are normally easily performed and a downside is generally cost. Another potential downside is the logistics of getting the tests performed. Unless your doctor is knowledgeable and experienced in requesting the specific test, the patient may have to perform a significant amount of research, inquiries including phone calls and emails and ultimately stress can result.
These are some tests that are esoteric, relative to the standard CFS ‘exclusion diagnostic’ tests.
Tests in Australia
- The SPECT scan. This is a ‘Single Photon Emission Computed Tomography’ scan. The SPECT scan shows how the blood flows through your brain. It is performed by having an injection of a radiolabled chemical that can be detected by the scanner as it passes through your body. CFS patients tend to have a reduced blood flow to their brain. According to Dr Cheney, 80% of CFS patients have abnormal SPECT scans. To my knowledge, major hospitals have SPECT scan facilities. My home city of Adelaide is home to a large portion of the research involving SPECT scans and CFS. I had a SPECT scan performed when I had mild CFS and it showed a significant impairment of blood flow to my brain. For more information about SPECT scans and CFS, click here: http://www.cfs-ireland.org/scientific/10.htm
- HHV6 early antigen, HHV6 IgG and HHV6 IgM. EBV early antigen and EBV VCA ELISA. These encompass some potentially important tests. HHV6 and EBV abnormalities have often been linked to CFS patients. Testing for HHV6 and EBV isn’t simple as hidden complexities are involved. Within Australia, the above tests are only performed at the Victorian Infectious Disease Research Laboratory (VIDRL.) http://www.vidrl.org.au/ If you are planning on getting these tests done, most local laboratories can act as interims and can draw your blood and send it onto VIDRL. This process is seemingly simple however potentially fraught with difficulties. It is important to write on the request form that you want titre levels reported as this is the significant piece of data required, not positive or negative. I wrote this on the request form however VIDRL still failed to report this so the requesting doctor may have to phone VIDRL and request they test your blood again and report titre levels. A good forum topic discussing getting these tests done in Australia is here: http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1214463 I must emphasise that if you do plan to get the above tests performed, be prepared for a lot of logistical hassle, a lot of phone calls and ultimately a lot of stress.
- Adrenal tests. Often adrenal abnormalities are either a secondary or primary problem in CFS patients. 24 hour salivary DHEA, Cortisol and ratio tests can be helpful in determining if adrenal problems exist. One place to order this test is Pathlab Integrative Medicine. http://www.pathlabim.com.au/page.jsp?p_id=14
- Hair Mineral Analysis. Pathlab Integrative Medicine can test your hair samples to determine the level of general and toxic minerals within your hair. They offer level 1 and level 2 testing. http://www.pathlabim.com.au/page.jsp?p_id=14
- Faecal Microbial Analysis (FMA). This test is performed by Bioscreen Medical. The test looks at the number of faecal microbial flora (both aerobic and anaerobic.) Bioscreen claim that patients with chronic illnesses have an altered faecal bacteria growth. For more details on a CFS patients experience with this testing click here: http://forum.notcrazy.net/index.php?topic=6538.0 Bioscreen’s phone number is (03) 9349 5933.
- MELISA metal test. This test is done by Pathlab and detects hypersensitivity to metals. This may include dental metals or implants. http://www.pathlabim.com.au/page.jsp?p_id=2&action=display&testID=66
- Natural Killer Cell Function test. To my knowledge, the only laboratory in Australia that performs the ‘Natural Killer Cell Function’ test is the ‘Sydney South West Area Health Service’ lab. Their website is here: http://www.sswahs.nsw.gov.au/sswps/ To find the NK cell function test click here: http://www.sswahs.nsw.gov.au/sswps/default_hb.htm then click Alphabetical Test Search: “N.” Some CFS specialists believe this test is currently the best biomarker for CFS. Note that ‘Natural Killer Cell function’ is different from ‘Natural Killer Cell Numbers’ which is performed by almost all laboratories. UPDATE: The Sydney South West Area Health Service lab doesn’t like performing the Natural Killer Cell Function test on CFS patients. If patients are desperate for this test, doctors may need to omit using the term “CFS” under “clinical notes” on the blood test form.
- T Cells, B Cells and NK Cells (number.) To my knowledge, most blood pathology laboratories in Australia run a test called a “Lymphocyte Surface Marker” test. Included in this test is T-Cell numbers (including T-Cell subgroups), B-Cell numbers and Natural Killer Cell numbers. All doctors in Australia can request this test on a standard blood test panel by requesting “Lymphocyte Surface Markers.” Most doctors in Australia would have never requested this test before however this test may be useful for determining immune system abnormalities.
- Future tests: Professor Kenny De Meirleir has worked closely with Bioscreen Medical in Victoria and some exciting tests may soon be available to Australians. In the future these tests would be sent to Bioscreen and then sent from Bioscreen to Redlabs in the USA or Belgium. These tests may include “FasTest (the actin serum screening assay); RNase L Protein assay; PKR Activity Assay; Elastase Activity Assay and Natural Killer cell Cytotoxicity Assay.” This is from http://www.bioscreenmedical.com/whats_new/whatsnew.html#New_Medical_Consultant_
Note that most of these ‘Australian’ tests are performed in many other countries around the world and aren’t unique to Australia. Also the price of some of the above tests is quite significant so it is worth enquiring about this before ordering the tests.
As I mentioned earlier, Theda Myint from Australia is getting many tests done from right around the world. These are the tests she is getting done:
“We are sending blood and fat cells to a lab called Acumen in the U.K. which does many speciality tests for those with ME/CFS. These tests are discussed in the free online book ‘Diagnosing and Treating Chronic Fatigue Syndrome (CFS)’ by ME/CFS expert Dr. Sarah Myhill (www.drmyhill.co.uk/).
• We are going to do all the tests it is practical to do as suggested by ME/CFS expert Dr. Byron Hyde (www.nightingale.ca) in his 2009 book ‘Missed Diagnoses: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome’. These will be done locally. This includes blood tests, doppler tests, ultrasounds and a SPECT scan.
• We are sending blood to a lab in Belgium called RED Labs. This lab does a range of specialty tests for those with ME/CFS and is used by ME/CFS expert Dr. Kenny De Meirleir. Many of these tests are discussed in his book ‘Chronic Fatigue Syndrome: A Biological Approach’.
• We are having the house tested for mould as discussed in the book ‘Mold Warriors’ by Dr. Ritchie Shoemaker.
• We are sending blood to a lab in Melbourne which does a test called the MELISA metal sensitivity test.
• We are sending stool samples to two labs in the U.S. which do advanced testing for intestinal bacteria, parasites, yeast, etc.
• We are sending urine to labs in the U.S. which test for a wide range (21) of toxic metals and mycotoxins (mould derived toxins).”
I emphasise that these are the tests that Theda is getting done and is found here: http://www.mecfswa.org.au/UserDir/Documents/treatments.pdf
I will continue to try various treatments without getting anymore testing done for the immediate future. If I don’t improve on any of the future treatments I have planned (over the next 6 months or so) and if XMRV does turn out to be a dead end I will then start to get some international testing done. I am quite ignorant in regards to all of the logistics involved in getting blood samples sent overseas. This includes the legality, the time frame that blood is able to be tested for specific tests, the blood tube storage methods etc. I also foresee various other logistical hassles regarding couriers and the overseas laboratories. Professor De Meirleir has in the past visited Australia and taken some blood samples back to Belgium for testing and this is my first preference. I am not sure when/if he is offering this service again. Also if I am able to use this service if he visits Perth/Melbourne and not Adelaide i.e. can I send my blood to him? These are some of the questions that I will be researching over the next 6 months.