According to CFS support organisation, Emerge Australia<\/a>, CFS is a complex<\/em>, multi-system, neuroimmune condition with a multitude of symptoms related to the dysfunction of:<\/em><\/p>\n\n\n\n While the exact cause of CFS is unknown, it may involve:<\/p>\n\n\n\n As an invisible illness, you can\u2019t tell by looking at someone that they have CFS.<\/p>\n\n\n\n Symptoms of CFS include:1<\/sup><\/p>\n\n\n\n 25-year-old Rianna Giraud<\/a> was diagnosed with CFS after living with symptoms for 9 years.<\/p>\n\n\n\n \u201cAfter contracting glandular fever in 2008, I spent 6 weeks bedridden with my mum waking me up to do basic tasks like going to the toilet. Once I was able to go back to school, I had approximately one day off each week. I gave up basketball and swimming, sports I excelled at, as my energy levels didn’t permit it. After a full day at school, I rarely had energy for things like assignments and homework. Luckily, when I reached Year 12, I was accepted into a university program which allowed me automatic entry into my chosen course as long as I passed the small university course during Year 12. I focused all my energy into that, whilst barely passing at school, so I had a chance at a future in design. Once at uni, the battle continued. Not only with my energy levels, but finding answers and solutions from my doctors. My recurring tonsillitis, achey body and poor immunity were put down to stress. Stress was never something I had issues with. I have always been very carefree and I found this a lazy diagnosis. Finally, I was recommended to see a doctor who looks at things a little differently. His motto is “treat the cause” compared to the “treat the symptoms”. (In 2017) I received a diagnosis of chronic fatigue as a result of Epstein Barr virus.\u201d<\/em><\/p><\/blockquote>\n\n\n\n Massage Therapist Deb Carroll\u2019s\nCFS diagnosis took 2 years.<\/p>\n\n\n\n \u201cI was a full time student with a full-time business, a husband who travelled a lot and two kids under 12. I was a competitive triathlete, I played hockey and our family holidays included bushwalking and camping. I commuted to work on my bicycle. My onset was obscure. I got a cold in 2004. I ended up hospitalised 6 months later with a serious lung infection. There were a LOT of other factors involved. I was under some serious stress with both my business and family at the time. Diagnosis took two years, during which my marriage fell apart, and only after several hospitalisations where every test under the sun was made with no outcomes. I could barely walk and when I could move enough to work I did it sitting or lying down. I was sent home to a psychiatrist and (an exercise programme) administered by a physio. I walked out of my business, sold all my sell-able possessions and moved in with my mum and dad. The kids stayed with their dad as I was deemed unfit as I could barely care for myself. Once I was able to stand unassisted, I moved in with some friends (then) couch surfed for two years, slept in my car and showered at the uni.\u201d<\/em><\/p><\/blockquote>\n\n\n\n Ashley Kalagian Blunt, author of My Name is Revenge, wrote about her 6-month journey to CFS diagnosis<\/a>.<\/p>\n\n\n\n People with CFS obviously have massage. Apart from my own\nbrief survey which showed around 30% of massage therapists have treated people\nwith CFS, other surveys of people with CFS confirm that massage is used as a\nmanagement tool. Although one study of US people with chronic fatiguing\nillnesses2 <\/sup>found that the most commonly used CAM was prayer, it also\nreported:<\/p>\n\n\n\n \u201cPeople with CFS-like illness were significantly more likely to use body-based therapy (chiropractic and massage) than non-fatigued participants (OR = 2.52, CI = 1.32, 4.82). Use of body-based therapies increased significantly in a linear trend across subgroups of non-fatigued, prolonged fatigued, chronic fatigued, and CFS-like subjects (p-trend = 0.002). People with chronic fatigue were also significantly more likely to use body-based therapy (OR = 1.52, CI = 1.07, 2.16) and mind-body (excluding prayer) therapy than non-fatigued participants …\u201d<\/em><\/p><\/blockquote>\n\n\n\n An unverified survey3<\/sup>\napparently conducted by the CFIDS (Chronic Fatigue and Immune\nDysfunction Syndrome) Association of America in\n2013 found \u201cAlmost half used alternative\ntherapies such as massage therapy, yoga, acupuncture and meditation to treat\nCFS\u201d.<\/em><\/p>\n\n\n\n With little\/no information on HOW massage should be undertaken, we rely on our commonsense to devise a treatment plan. This involves treating each CFS client as an individual with different requirements to every other CFS client we\u2019ve ever treated.<\/p>\n\n\n\n There are common themes\namongst the clients I\u2019ve seen with CFS: The intake involves a lot of talking\nand there\u2019s always tears. Those tears may be for many reasons but they\u2019re\nprobably something to do with how big an impact CFS has on the client\u2019s current\nway of existing.<\/p>\n\n\n\n Something commonly reported is post-massage fatigue. This massage side-effect was enough for Ashley to stop getting massages:<\/p>\n\n\n\n \u201cI used to love\ngetting massages, both remedial ones for back\/neck issues, and just for\nrelaxation. But once I got CFS I had to stop completely – a massage is just as\ntiring for me as trying to go for a jog. Every time I got one, I ended up\nexhausted in bed for 1-2 days, so I stopped because I already spend enough time\nin bed.\u201d<\/em><\/p>\n\n\n\n For Rianna, who had regular massages\nbefore she got CFS, it\u2019s all about planning:<\/p>\n\n\n\n \u201cI am often exhausted by it. Generally I plan only the\nmassage for that day in case I need to nap afterwards. I find the next day I am\nextra achey, but from then on I see rather vast improvements.\u201d<\/em><\/p>\n\n\n\n Deb now has fortnightly\nbodywork, utilising a variety of modalities and self-treatment, however,\ninitially:<\/p>\n\n\n\n \u201cRemedial work knocked me for 6. I’d sleep for hours\nafter and suffered excruciating DOMS for days post treatment. Cupping was a disaster\ntoo; subsequent bruising from cupping actually led to open bleeding sores.\u201d<\/em><\/p>\n\n\n\n Like Deb, Rianna finds her\nsymptoms reappearing around 2 weeks after her massage.<\/p>\n\n\n\n Massage therapy may be able\nto assist with symptoms and provide short-term relief. It can\u2019t, however, \u201cfix\u201d\nor \u201ccure\u201d CFS.<\/p>\n\n\n\n AMT member, Gabby Griffiths reminded me of something Robert Libbey<\/a> spoke about during his LAST workshops at the 2018 AMT Conference, which was along the lines of, if 100% (in health\/wellness\/pain-free) is not achievable, then what do you hope to get from the treatment today? That philosophy is helpful in determining a treatment plan for clients with CFS.<\/p>\n\n\n\n The respondents to my survey consistently said that massage\npressure varied from CFS client to CFS client. It was down to individual\npreference.<\/p>\n\n\n\n Massage Therapist Suz Wenzel explained how she works with\nher CFS client: <\/p>\n\n\n\n I base my treatments on his needs, his pressure requirements for what he felt. Sometimes it\u2019s a medium pressure over the same part of the body (as in a \u2018good pain\u2019 sensation and he wants that release from the tension or pain). (It) all depends on their pain tolerance on the day and what they feel they want with type or style of treatment and depth of pressure.<\/em><\/p><\/blockquote>\n\n\n\n As a massage therapist with CFS, Deb adds:<\/p>\n\n\n\n \u201cYou end up being more\nthan a massage therapist. You’re a counsellor, advocate and much more. If you\ntake someone on remember you are likely to be in there for the hard yards. I\nfind keeping them positive the most important thing in each treatment. These\nfolks have to re-imagine themselves. Create another them. They will never be\nable to do the energetic things they once used to enjoy. … Be patient. Be flexible. This condition is so very\nvariable.\u201d<\/em><\/p>\n\n\n\n Working with someone with CFS\nmay require business flexibility too. As Deb notes:<\/p>\n\n\n\n \u201cSometimes they will simply not be able to get to an\nappointment.\u201d<\/em><\/p>\n\n\n\n According to my survey, the frequency of massage varied from weekly\/fortnightly sessions to spasmodic. For some with CFS, it\u2019s about prioritising how their daily energy is used in what is commonly known as spoon theory<\/a>. One of my CFS clients has children and prioritises being able to play with their children over massage when their energy levels were low.<\/p>\n\n\n\n With something like CFS, which turns someone\u2019s world upside down, the client knows the condition better than any massage therapist (without CFS). They have researched the treatment options. They have read all the articles. They have tried all the treatments, supplements and seen all the specialists to improve their health. Although well-meaning, asking someone with CFS \u201cHave you tried …<\/em>\u201d is discouraged. It\u2019s time to listen to the person and learn from their experience.<\/p>\n\n\n\n Deb Carroll manages her working week by factoring in time\nfor sleep in the middle of the day. Ashley Kalagian Blunt works part-time and\nreduced hours on the days she works. Rianna Giraud started her own design\nbusiness which enables her to set her own hours and rest when she needs to.<\/p>\n\n\n\n Trying to find information about treating people with CFS is\nlike swimming up a creek of crunchy peanut butter. With little research on any\nbenefit or contraindication of massage for people with CFS, it is obvious that\nmore research is warranted.<\/p>\n\n\n\n *Although Chronic Fatigue Syndrome is also known as Post-Viral\nFatigue Syndrome (PVFS) or Myalgic Encephalomyelitis (ME) or abbreviated as\nME\/CFS, for the purposes of simplicity, this article only refers to Chronic\nFatigue Syndrome or CFS.<\/p>\n\n\n\n 1. http:\/\/emerge.org.au\/mecfs\/symptoms\/#.XTE6I_IzaM8<\/a><\/p>\n\n\n\n 2. Complementary and alternative medical therapy utilization by people with chronic fatiguing illnesses in the United States<\/a> by James F Jones et al, BMC Complementary and Alternative Medicine 2007; 7:12 April 2007<\/p>\n\n\n\n 3. https:\/\/ammes.org\/alternative-and-complementary-therapies\/<\/a><\/p>\n\n\n\n Complementary and alternative medicine for patients with chronic fatigue syndrome: A systematic review<\/a> by Terje Alraek et al, BMC Complementary and Alternative Medicine 2011; 11:87 October 2011<\/p>\n\n\n\n Chronic Fatigue Syndrome Myalgic Encephalomyelitis \u2013 Primer for Clinical Practitioners 2014 Edition<\/a><\/p>\n\n\n\n The Voice of the Patient \u2013 A series of reports from the U.S. Food and Drug Administration\u2019s (FDA\u2019s) Patient-Focused Drug Development Initiative \u2013 Chronic Fatigue Syndrome and Myalgic Encephalomyelitis<\/a> Report Date: September 2013<\/p>\n\n\n\n Epstein-Barr Virus May Be Turning On Pathogenic Genes In ME\/CFS<\/a> By Cort Johnson, ProHealth.com, 13 July 2019<\/p>\n\n\n\n As Terrible Lotteries Go<\/a> by Ashley Kalagian Blunt<\/p>\n\n\n\nSymptoms<\/strong><\/h4>\n\n\n\n
I have CFS \u2013 Here\u2019s My Diagnosis Story<\/strong><\/h4>\n\n\n\n
![\"\"](\"https:\/\/i0.wp.com\/blog.amt.org.au\/wp-content\/uploads\/2019\/08\/FullSizeR.jpg?resize=240%2C240&ssl=1\")
![\"\"](\"https:\/\/i0.wp.com\/blog.amt.org.au\/wp-content\/uploads\/2017\/11\/Deb-Carroll.jpeg?resize=212%2C300&ssl=1\")
Massage for CFS<\/strong><\/h4>\n\n\n\n
![\"\"](\"https:\/\/i0.wp.com\/blog.amt.org.au\/wp-content\/uploads\/2019\/08\/ashley.jpg?resize=236%2C246&ssl=1\")
The Treatment Plan<\/strong><\/h4>\n\n\n\n
![\"\"](\"https:\/\/i0.wp.com\/blog.amt.org.au\/wp-content\/uploads\/2019\/08\/CFS-Massage.png?resize=415%2C347&ssl=1\")
<\/figure><\/div>\n\n\n\nOther Stuff<\/strong><\/h4>\n\n\n\n
The Last Word<\/strong><\/h4>\n\n\n\n
Source<\/strong><\/h4>\n\n\n\n
Further Reading<\/strong><\/h4>\n\n\n\n
![\"\"](\"https:\/\/i0.wp.com\/blog.amt.org.au\/wp-content\/uploads\/2017\/11\/Sharon.jpg?resize=143%2C151\")
<\/figure><\/div>\n\n\n\n