Discussion in 'General ME/CFS News' started by Firestormm, Jul 20, 2013.
Interesting that they are equating CFS with Vit D deficiency as if that were the only issue involved.
Interesting too that they consider 2000 IU a megadose...
Also an issue is that many with CFS test low for vitamin D, but have extremely high active vitamin D, according to KDM. So taking more vitamin D might make things worse. However the conflation of CF with CFS is typical of just how much research reporters do on this.
I guess this is what they are referring to. Can't seem to find another study Berkovitz performed:
UGH! She is Vitamin D deficient which is causing the symptom of Chronic Fatigue. She doesn't have CFS or ME unless she is experiencing more symptoms then just Fatigue.
The 2009 Berkovitz study is typical of what I suspect is going wrong. They test the wrong thing, and hence draw the wrong conclusions. If KDM is right, and conversion of vitamin D to the active form is being driven by inflammation, then low inactive vitamin D is a sign of inflammation and not deficiency.
Activated vitamin D is calcitriol, or 1,25-dihydroxycholecalciferol.
I've got <4 ng/mL of Vit D2 and 16 ng/mL of D3 and the total of 16 ng/mL is given as below the reference range of 30-100 ng/mL.
I'm supplementing with 2,000 iu of Vit d3 a day. I'm mostly housebound and get very little sun exposure.
Am I doing the right thing in supplementing?
Hi Sasha, I don't know, but then again neither does your doctor. D2 and D3 are forms of vitamin D that do not tell you what your active vitamin D status is. So you could be deficient and need supplementation, or you could have an excess. In ME, at least until the science around this is clarified, I think it prudent to also check calcitriol levels. I do not know, however, if taking more vitamin D will hurt you. I am still unclear on this point. Vitamin D toxicity is known, but its not considered common - but then they are not checking inflammatory disorders. Hypothetically it could result in hypercalcemia, but your doctor should have picked up on that. I have not heard of this in ME however, so I suspect something else is happening. Alex.
Thanks, Alex - argh... so much is unknown!
Taking vitamin D supplements makes me feel sleep deprived.
You think a medical certificate for CFS for the Senator will cut the mustard with her employers at the Hague?
I kinda thought 2000 IU was a little low also given how low she was. I do 5000 IU and double it when I have a bug (per Drs orders). My VitD has finally just reached the bottom of the range I usually test out now around 50-55, doctor wants it around 70.
Not unless they had 'the earth is not flat' epiphany regarding CFS related conditions.
How the heck did you find this article, such a needle in a haystack.
It's creating quite a stir this senator's health in her own country - I get all the alerts for CFS and ME off of Googly. Not known of such a high profile sufferer before; and I hadn't realised she was due to become a Judge at the Hague. Quite an accomplishment. Her CFS battle appears to have been going on for some time - but she fights back when she can like we all do. Some might say 'boom' and 'bust' but it's hard to quit until you are forced: something we can all probably associate with.
ME Association coverage
It is very hard, I have done the revolving door work/no work for a few years, prior to that I just used vacation time and pushed thru when I had more of a crash / recovery existence. This past couple of years adequate, sustained recovery has eluded me. Today is my last day before my company can terminate me next Tuesday, don't get me wrong my company has been longsuffering as I have tried to find a resolution to this chronic illness over the years. This has been so hard, I have tried to tell myself to muster once again, that this is my financial future, my healthcare insurance, certainly I can go back again and finish fifteen months. But I laid in bed for the last couple of hours, chills, weak, chest pressure, discouraged, tired, nausea, tinnitus, muscles twitching and the vibrating/nerve explosions from toes to torso and just could not see how I could try to work in this condition, worried if I try my health will suffer more. What a choice to face, I'm not sure it is a choice anymore, I think I am past that threshold. I am still hoping these latest tests prove something so that whatever this is doesn't kill me before I can get treatment.
I sit here now typing and feel I am fighting my body and mind to do something I use to do without thought or effort. I don't know why I have been so inadequate to explain to doctors, family, friends and work how sick I am, how much I want to be well and not in this battle, how much I want to salvage my 20 yr career, participate in life again, but it seems I have just become a number, no one hears me, few acknowledge the daily, sometimes hourly battle I fight. I'm told I don't look sick, when I do venture out to be around people I use energy to function at my best, but they don't see the impact hours to days later depending on what I did. I've been told over the years I'm just depressed or it's all in my head, just pull yourself up by your bootstraps, everyone else does, as if that is not what I have been doing for years. I don't understand fully this need to have people recognize and understand what I am going through but I think it is human to want to feel valued and believed, to help keep the fears under control, the fear of maybe never getting well again, never getting one's life back and yet wanting to be told I am still important to someone in spite of my condition.
I have been left alone to manage this aside from an occasional email, text or phone call, no one comes to visit me, to help lessen the physical and emotional burden. My primary outside contact is mainly doctors, the rare phone call with company reps or the clerk at the grocery store, following up with companies because once again I forgot to pay a bill (I never use to have trouble paying my bills on time but paper seems to overwhelm me now). Some days I don't have enough energy to just have a phone conversation but I am grateful if someone took time out of their busy day to contact me, check on me. That is why I am grateful for the life line that is Phoenix Rising. When I am too sick to research, someone else has carried on the research; when angry I have been allowed to vent and still receive support and acknowledgement; when sad others who also deal with these issues and fears come along side to encourage me to keep fighting, and on those days/hours I feel a bit better I have the opportunity to return the same blessings to others here that are in need. I am happy if I am strong enough to encourage others here to never give up, never give in and keep fighting because even though the world around us is not validating us, each and every one of us is important, of value!!!
I don't even feel well enough today to feel sad that this maybe the last day of my 20 year career (I cried yesterday but crying just takes too much energy and gives me a headache and one more symptom I don't need). I wanted to send one last emotional plea to my company but besides not feeling well enough I'm not sure it would matter so I think it better for now to be like Christ when he was treated cruelly and accused falsely, he said nothing. I know God is aware of my circumstances and I have to trust in His sovereignty. But it is still very hard. I am grateful for Phoenix Rising because at anytime of the day, when I am up to it, there are people here from all over this world who really understand, who get it, it's a place you can search for answers and get ideas, feel connected briefly, have a chat, get encouragement and give it, restore a sense of hope when one is feeling hopeless, to stoke the fire to find an answer, to feel human. Some of us only have the strength some days to barely hold up a smartphone or laptop and check Phoenix Rising to see if someone responded to our post, that virtual connection is sometimes all we need to keep going.
I saw a story that touched my heart last night, a man in Denver noticed all the homeless and built a baseball park and went around and encouraged them to come and play ball once a week. For that moment, those folks who are struggling could feel they were once again a part of humanity, they could take the focus off their troubles briefly, they could be in the game again instead of feeling benched in the game of life. It warmed my heart to see one man out of thousands that see the poverty of body. mind and spirit around them willing to reach out to those who for whatever reason could not help themselves and lift their spirits when they are at a low point in life. Now that was a news story worth reporting in my opinion. Some days I wonder if what we endure is more a test for those around us, how will they respond to those in need, a test of their humanity. I wish and pray we all have our health returned and may we never forget those still in the battle.
alex3619, Is calcitriol the same thing as 1.25 OH Vitamin D?
Yes, I think so, see post 7.
Hello everyone I'm from the Philippines and just thought I would share the article below. I've been struggling with CFS since late 2011 but only got diagnosed last year. In 2012 while still desperate for a doctor who could help, upon doing research and finding out about Senator Santiago's CFS diagnosis, I called up her office and asked if they can refer us to the doctor who diagnosed her. Unfortunately the office cannot disclose who this doctor was, but they did tell us the hospital. We found a certain Dr Diaz in St Luke's QC, and he also ordered to test my Vit D levels (he isn't the Senator's doctor though). Upon testing, my result is Vit. D level at 12, so he prescribed 5000 iu of Vit D supplement daily. He also prescribed CoQ10. I felt just a bit better while taking the supplements but the fatigue is still there. I would say that prior to having CFS, I've been getting lots of sun! So the lack of sun couldnt have resulted to my fatigue, it's probably because I've gotten too tired to stay out in the sun for so long so my Vit D levels dropped? I dont know for sure. I stopped taking Vit D a couple of years ago because I remember getting headaches when I took them.
I've been seeing a new neurologist since who put me on amantadine 100mg twice a day. Anyone else on the same medication?
Miriam: DOH must attend to chronic fatigue syndrome problem
April 30, 2009 1:57pm
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MANILA, Philippines — Senator Miriam Defensor Santiago chided the Department of Health on Thursday for not giving attention to chronic fatigue syndrome (CFS), a still poorly understood debilitating disorder supposedly afflicting many Filipinos.
In a press statement, Santiago said the DOH must conduct studies on the disorder and determine the number of Filipinos suffering from it.
“It appears that CFS has slipped under the DOH’s radar, despite the fact that more and more Filipinos are being afflicted by it," she said.
Santiago earlier filed Senate Bill 3195, which tasks the DOH and the Philippine Information Agency (PIA) to carry out a national campaign to increase public awareness and knowledge of CFS.
The campaign is aimed at the dissemination of information on the causes, prevention, and diagnosis of CFS, as well as available treatments for sufferers.
“One of the challenges faced by CFS-affected persons is the apparent lack of recognition regarding the seriousness of the disease. A CFS patient faces the social stigma that he or she is just malingering, wants attention, or is feigning CFS-like symptoms," she said.
She added that the stigma can have a negative psychological effect on the patient and may cause prolonged recovery from the disease.
In late 2008, Santiago was diagnosed by her doctors to be suffering from CFS. She had to take a leave of absence from the Senate upon the advice of her doctors.
Recently, Cristina Ponce Enrile, wife of Senate President Juan Ponce Enrile, resigned from her post as ambassador to the Vatican, after being diagnosed with CFS.
CFS is defined as a complex illness that produces extreme fatigue over a prolonged period. The condition has also been called post-viral fatigue syndrome, myalgic encephalomyelitis, or chronic fatigue and immune dysfunction syndrome. The condition impacts primarily on the immune system, nervous system, muscles, and endocrine system.
Although the number and severity of the symptoms may vary, the major symptoms of CFS are: extreme tiredness lasting at least six months; impairment of short-term memory or concentration; sore throat; tender lymph nodes; muscle and joint pain without swelling or redness; difficulty sleeping; headaches; and prolonged muscle fatigue and feeling ill after even mild exertion.
CFS sufferers may also experience abdominal pain, earaches, intolerance to alcohol, chest pain, coughing, dizziness, nausea, irregular heartbeat, shortness of breath, bloating, dry eyes and mouth, jaw pain, joint stiffness in the morning, night sweats, depression, and weight loss.
Since the disorder carries varying symptoms, CFS is often unrecognized or misdiagnosed. The condition is more prevalent among women aged 25 to 45, but it can affect children and adults of any age and people from all ethnic groups. In the United Kingdom alone, it is estimated that there are 150,000 people suffering from CFS.
Santiago complained of dizziness, nausea, and arrhythmia or irregular heartbeat prior to being diagnosed with CFS. - Amita Legaspi, GMANews.TV
More from: http://www.gmanetwork.com/news/stor...st-attend-to-chronic-fatigue-syndrome-problem
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