The Massachusetts ME/CFS & FM Association, a 501(c)(3) founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), and FM (Fibromyalgia), their families and loved ones.
We are dedicated to working and advocating for effective medical research and treatments that will both alleviate patient suffering and lead to a cure.
We provide information and supportive services to help patients, their families, and their loved ones cope more effectively with these illnesses.
We work to educate both healthcare providers and the general public, so that ME/CFS and FM will be recognized and understood as serious physical illnesses which can be severely disabling.
P.O. Box 690305, Quincy, MA 02269-0305 • Info Line: 617-471-5559 • massmecfs.org/
I have been looking and searching libraries years ago trying to find out through all kinds of medical books, internet information etc l have been in pain in my body since a child, my mother was Dutch my father met her while stationed in Germany during WW11 , l would always complain to my mother about the pain in my legs , l would describe it as “ having a screen door in my legs which l know now that it must have been numbness and pain ! she would say’ awe honey that’s just growing pains, during my child my dad’s saved enough money up so my mom plus the rest of us could go to Amsterdam for my mother had not seen her family in 12 years we landed up staying for 2 years, for my parents were thinking of moving there,my brothers and l attended school, which there school system would give health exams every 6 months, during my health examination a young female doctor wanted me to walk from one end of the room to another and noticed that l had a mild case of Scoliosis, l had what the Dutch called a Gibs bed made to lay in every night to straighten my spine , but l neglected to do this for it was very uncomfortable, as much as my mother would have liked me to do that , she would wake me at night and say “ you need to use this darling but l was stupid and didn’t listen of course l developed spurs also looking back l recalled a lot more symptoms, like popping my hip out of joint always twisting my ankles while skating, just a lot of things going on my husband told me Honey you seemed to be doubled jointed , putting my thumb to my forearm , l remember getting sick at school from drinking a pint size cartoon of milk , having car sickness and getting sick on the boat coming back to America l was terrible sick had to stay outside so the fresh air could blow in my face while my daddy would bring me 7 up to try and ease my nausea, l had 4 brothers none of them got sick only me , l had problems with my pregnancies, tonsils, voice hearing everything think you could name l had , l also had Rheumatic fever as a child , l became allergic to Pennicillan because of streptococcus infection always sick , l learned from all my doing research all my life l finally run across the autonomic system, ehlers Danlos syndrome autoimmune diseases, my father passing away at 47 years old my mother telling me little bits and pieces of his life’s journey and us kids witnessing his sickness and death how the medical system couldn’t find anything wrong in the beginning and how eventually he was in so much pain doctors told my mom he had so many things going on they had to do an autopsy to find his final diagnosis and cause of death “ A stroke he had a enlarged heart a tumor, some other things l don’t remember but l guarantee you he had vascular Eds I am all most one hundred 💯 percent sure , l am in so much pain in my hands right now as much as l would like to share a little more of my journey of being treated like dirt by a primary care physician and others through the years, he seems to believe that your body ‘ he knows more then you and your just an old lady that is seeking drugs , attention or something else l can’t for the life of me figure that mean doc out , l am too sick to go through much more of him or anyone else like him , nobody seems to care thank you for listening to me and please reply and let me know what steps to take and how to get some help “ God is allowing me to me here on this earth for a reason l hope with my information someone else can be understood and treated better than me 🙏🇺🇸🙏❤️🙏🥰💕🤔
26:55 this is very interesting to learn that the scan is important to receive when flared up. It’s empowering to know these protocols and why testing results could vary.
Medical help for ME/CFS - Dr. Svetlana Blitshteyn (Buffalo, York, Dysautonomia Clinic online) and Bateman-Horne Center (Utah). Not a cure, but several steps can help.
was told Intravenous IV-IG can reduce Small Fiber Neuropathy via regular Intravenous administration. Recently I was introduced to a oral capsules by METACURE. The Revive Alpha Lipoic Complex with Curcumin is much faster than Intravenous IV-IG and ALA. The SEVERE NERVE PAIN, TINGLING AND BURNING are reduced about 90% to 100% in one to two weeks. The NUMBNESS is slowly going down though takes much longer.
Loved his emphasis on REMOVING the source of mold. All the sprays, bleach, candles, Himalayan salt lights, etc. in the world will not solve the problem. Wash. Scrub. Wipe. Cut out if necessary. Thanks for providing this content. I wish I had seen something like this 5 years ago.
22:13 I will say that while I agree with most of the presenter's advice, I would recommend the anti-mold fogging system from EC3, who make a range of anti-mold botanical products. It works well as a generalized anti-spore volumetric fill, which is useful once you have removed the exposure source.
Dr. Felsenstein is an amazing doctor. I feel extremely grateful to finally have a Dr working with me rather than what often felt like against me. After 20 yrs of living with a complicated illness like ME/CFS, I finally feel heard, as well as taking care of. Dr.Felsenstein is compassionate & supportive. I love how we work "together" to improve my symptoms. I fought this illness alone for so many years. It is so nice to finally have a Dr who is on my team. We ( the ME/CFS community) need more Dr's like her, Please train some.
I SO agree with what you are saying. Some psych issues aren't due to emotions, but to biology/ physiology. (Sorry, not well versed in science!) I had a massive head injury due to car accident. Head repeatedly slammed against steering wheel, bending wheel and breaking bones from eyebrow to jawbone. 3 months post accident, in a blink, world changed. Short term memory, sudden sporadic bouts of crying/deep depression with no reason, OCD like behavior, etc. Psychiatrist put me on STRONG anti-psychotic drugs, which kept me numb, and deemed me mentally ill. Didn't matter that Pre accident, I held retail management position, graduated a year early from high school, had a very high IQ, had friends, did things, took care of self. After two weeks on the drugs, I found myself reaching for them long before scheduled time of dosage. I immediately threw them out and never returned for treatment. Why don't these Phd's look at body before diagnosing mind?
@@goldilockz6517 My Dr was one of the sensible ones who said because I have had ME/CFS since 1993 and it is stable though I still only have 4 good hours a day not to risk the untested shots as the effect on my immune system could trigger further problems and throw me back to the terrible days of 24/7 misery. Turned out to be a godsend that he was correct as many people I know are injured or worse. I'm NOT an anti-vaxxer and have had all of my shots as a child and gave my daughter hers too but these were untried and untested long term shots. The long term effects (including cancers and heart conditions are just beginning to show up everywhere. Take care.
Thank you for your wisdom and your advice ☺️. You are such a great example to all of us who have MECFS. You keep persevering despite how you might feel. May God continue to bless you and your family 💐☺️🙏🕊️. With love, Miss Monique ❤️
I am a mother of a severely ill daughter with ME/CFS. We live in a small country in Europe. Our experiences are the same as those of people all around the world. She's been ill for 14 and severe for 7 years. Our visits to doctors were very traumatic and damaging to us both. I've developed anxiety disorder. We are abandoned from our family and friends. People like Ed Yong have tremendous positive impact on our lives. We admire and respect him deeply.
When is Ampligen going to be approved in United States. Many people including myself are suffering from chronic fatigue syndrome and feel like nothing is being done for us. We feel ignored
So glad for all the symptoms being understood now, drs used to be dismissive when mentioning these symptoms , I'm also intolerant to lithium batteries and masts, people think you are nuts if I say I can't use lithium batteries!!!!
In uk- nhs, in 10 min appt. Can only discuss one symptom, my varied symptoms spanned 7 yrs, nobody connecting dots till finally covid and flu put me from mild to severe
Paul treated me for GPA disease while he was at Brigham and women's. In my humble opinion,he is one of the top researchers in America, if not the world!
I am one of these patients with confirmed small fiber neuropathy! Not only do I deal with ME/CFS but horrible pain in my hands and feet and POTS. I really hope more effective treatments are found than the triweekly IVIG I've spent the last couple years on.
I just experienced horrifying civil rights violations and medical abuse at a hospital in Albuquerque, NM. I was diagnosed in 2020 and have been severe until November 2023 when a mental health provider pushed a drug combination on me that caused my orthostatic intolerance to become dramatically worse. I am now Very Severe. I am also autistic and attempted suicide during a meltdown after not sleeping more than 4 hours a night for several months. Even though my husband instructed the paramedic to have the ER doctor call him as soon as i arrived to discuss ME/CFS, that call was not made. My husband told the medics that i was diagnosed on the autism spectrum in 10/23 and that i was experiencing a meltdown. I told the medic in the ambulance about my ME/CFS and reiterated the importance of contacting my husband and that i was about to become nonverbal. I described to her what it would look like and that it was normal. She gave all this information to the nurse in the ER. Then the nightmare happened. I was left in a room alone for an extended period. I was absolutely terrified and not sure what was happening, but i knew help was outside that door. So i tried to crawl to it and collapsed halfway there, completely drained and unable to move or speak. At that time, i was dragged back to the gurney and restrained as i screamed to them "i am autistic! This is a meltdown! Please help," as well as "i have ME/CFS. I am very severe. Please, you are hurting me." The doctor, the charge nurse, and an RN took turns telling me that i am not autistic, this is not an uncontrollable autistic meltdown, that i was doingthis to myself and i needed to learn how to behave. That ME/CFS didnt exist, that i had no physical ailments, that i was making this up and doing this to myself. I was refused feminine hygiene products as well as a wheelchair. When i was finally allowed a wheelchair, the charge nurse put it out of my reach and told me to walk to it. A security guard came in at that point and told the charge nurse that HE would help me. When we returned to room, the charge nurse again refused to help, and i fell (which was not documented). The security guard had to pick me up off the floor and place me on the bed while the charge nurse just stood there. I was put in a room without a call buttom and a closed door. After i called out for help to the restroom, it took several minutes for anyone to come. The charge nurse of that shift scolded me for yelling, even though i had no other way of asking for help through a closed door. I have been unable to eat since i arrived at the hospital. Its been two days. Ive already lost 20 pounds since Thanksgiving. When we arrived home, we tried to contact my PCP only to find that she had discontinued my treatment. I now have no doctor. I am very severe. My husband and i are desperate for help but we don't know where to turn. I don't want to show up on ME-pedia's list of fatalities. Every single doctor i have spoken with in NM since 2020 has denied the existence of ME/CFS. The people treating me at the hospital didnt even know what POTS was. An orderly had to explain it to them. Please help. I am really scared. I cant even get medical care because i live in a rural area and my PCP was one only a few in the area. Please help me.
Downvoted for being youtube standard license instead of creative commons. There is no justifiable reason why useful information like this should be restricted by copyright.
