What if you suddenly became ill and couldn’t get well? The feeling that you have the bad flu with all the symptoms, aches and exhaustion, but it doesn’t go away? So, you go to the doctor. No common tests show anything. So, you go home to rest. But, you know something is wrong, especially since you may feel a little better but quickly get worse when you try to be active. This goes on for months, as you try to live your life, go to other doctors and pray for help not found. This has led to many becoming housebound and disabled for life.
This is real for an estimated 2.5 million people in the United States and many more around the world. Many are also living undiagnosed and wondering why they are unable to function. Their “battery” is chronically low. The symptoms can be even worse in some. They have constant pain, weakness, nausea, trouble thinking and pass out upon standing from a comorbid condition called POTS. Severe patients are bed-bound and tube-fed. It is a living nightmare. Some just give up on living and waiting for help.
When this illness struck our young daughter, we felt sure there would be help. It was quite an odyssey and learning experience. We didn’t know anything and neither did most doctors!
Although ME (myalgic encephalomyelitis)-type illnesses have been documented in history, ME has not been commonly taught in medical schools until recently. It is believed to be related to neuro-autoimmune issues and inflammation. It is in the general family of illnesses such as MS, lupus and fibromyalgia.
We were shocked at the lack of knowledge and care available! We finally went to Sansum Clinic and later Stanford to get some answers. But there is no cure, just treatment of some symptoms. Stanford now has a CFS clinic with a long waiting list.
Obviously, there is a lot of need. There are a very limited number of specialists around the country. Thank God, through our own research, we found a great one. Some research studies are currently being conducted that show promise. Private donations have helped, while the government funding has been pitifully low. The NIH response has been seriously disappointing and underwhelming, while the community of patients has lobbied for change when they are least physically capable.
With help from family and friends, they will be rallying around the world on May 12. The largest such effort is called the “Millions Missing” campaign. These patients of all ages are missing from school, jobs, communities, and their former lives. This is not acceptable, is it? What if it was you or a loved one? Please learn and help.
To see a great, 2018 Oscar short-listed documentary on a patient, see “UNREST.” It can be streamed online. Jen Brea, the patient, also does a TED Talk on ME/CFS. Contact the NIH Director, Dr. Francis Collins, and your congressional representatives to ask for parity for research funding. We have been asking and literally waiting decades for this.
For education and advocacy, see MEACTION.net
Donate to ME/CFS research at the Open Medicine Foundation, Simmaron Research and the Solve ME/CFS Initiative.
Joanna Tatum lives in Dinuba