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The Improve Health Rising Survey (2020)
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look forward to your blogs. this is how i get my info.
Thanks Joye.
I so agree joy. This can be a lonely and isolating life and Cort’s blogs makes one feel part of something and that there’s people out there who truly understand.
Yours is the only website I look at. After having ME/CFS for 32 years there is no point my searching others. I appreciate all the information you provide.
How long have you had this illness? How do you manage to do what you do to help us? How about a photo?!
Thanks Diane,
I came down with ME/CFS in the early 80’s. My illness is much more moderate than others but for me is very restricting. I used to be very athletic and enjoyed exercising. That all disappeared. I am now able to do only short walks but I can and I’ve always been able to read and write! They are very energy intensive and I am more limited than I would like to be but I’m still able to do it. If I had more energy I could really whip them out! 🙂
There’s more about me and my rather unusual lifestyle and picture here – https://www.healthrising.org/about-us/cort-johnson/
Thanks for telling us about yourself Cort.
I just completed your survey, but your answer to Diane brings up a question I think might be worth discussing.
I’m glad you can read and write. My reading ability plummeted with my CFS, although I’m able to keep pretty mobile. A PT specializing in balance issues told me that the eyes use a huge percentage of the body’s energy, so it was understandable that reading would exhaust me. (I’m good for rarely more than 10-15 minutes.)
Re the PT, who was a balance PT, this contributes to both the balance problems (since eyes are so involved in balance) and the overall fatigue.
Is this something you’ve discussed? If so, I’d be happy to look for it on your website.
Thanks.
Is the menu bar the list of topics down the RHS of the screen?
If so I change my answer to YES but I can’t cope with it!
But thanks for all you do and your dedication, This Covid has shown me my pacing is not nearly good enough ,but getting better with the lock downs, I have a live-in carer friend who does all the daily living activities, so we can eat together, take a short walk in the park and woods avoiding the crowds, watch the natural world and the passing of the seasons, Forest Bathing with a mask to reduce the effects of Perennial Rhinitis; just worked out I had it all my life! Duh!
With the advent of Zoom meetings, conferences and Summits I can cherry pick what to watch and learn, [no TV ] In my time, in my Flight of the Navigator Reclining Chair, What Luxury, And The Support Groups are inviting Speakers and putting those on Zoom and afterwards on You Tube.
Yes!
I and most of the CFS patients visiting HR website don’t have a medical degree and therefore the detail of biochemistry is a waste on us. Would like to suggest the author to provide an abstract. Speaking for myself, all I want to know is if there’s any meaningful/proven results, in plain English, short and up to the points.
How about if the blog has both? I really appreciate the technical info.
Viz., I appreciate your viewpoint, but I don’t know how you can claim to speak for “most of the CFS patients visiting HR website”. You certainly don’t speak for me.
I do think theres something in the blogs for everyone. Depending on how I’m feeling I may read the whole thing ,if I can’t understand some of the technical stuff that’s ok I’m sure there’s lots of readers who can and then I just go to the Gist which is invaluable.Cort thanks so much.
I have to agree. Although the info would be good to take to a doctor. There isn’t one in my area any longer, and I’ve about decided they can’t really do anything for me anyhow.
I’ve had the FM diagnosis for 14 years, but think I’ve had FM for 25 years and CFS at least 50 years. I have appreciated the information you have provided. All the different info you have talked about has helped me to stabilize and manage my conditions. I’m not cured because if I neglect my Vitamins and mismanage my activities, I end up wiped out and hurting. Your information is very helpful.
The difficulty of the material is always a concern – and it always will be. Have you checked out the GIST? That’s an attempt to provide the results in a shorter and easier format.
PS Guang, I’m sorry to say this — but if you’re asking Cort only to provide meaningful and proven results, you’re probably going to find pretty slim pickings, because there aren’t really much of any yet. Promising results is a big improvement over the past.
I share some balance issues like Cameron. I become tired reading as well. It helps to do things in short segments. I found some issues I was having connected to Nexium meds. I’m hopeful there will continue to be research on COVID-19 long haulers and ME/CFS/FM. I believe it benefits both communities. Thank you Cort for your efforts. I think some of us have information in our health journeys that medical professionals could use. Possibly going back the EBV (Epstein-Barr Virus) studies or the vagus nerve connection. I’m willing to share and compare.
Absolutely agree re the vagus nerve connection. And that ME/CFS people have a lot of valuable information for our medical professionals – if only they had the time to listen and collaborate, and the money for research.
I instantly tear up if I try to imagine what my life would have been like, during the past 12 years, without your voice, research, analysis, and personal experience. If I keep expounding, I worry that it will add stress to your life, which is not what we all want! Yes, I speak for the majority of your followers to say Thank you!!!! Keep it up as long as it feels good for you. Your contribution to my quality of life is priceless. Love, Jiki
Thanks! 🙂
Thank you SO much for your work and for this blog Cort. I disagree with the criticism re complex information. True, most of us readers probably don’t have a medical/science background, but we do all have a lived experience and the information you provide can be scanned through or read more closely. I find it all valuable.
Cort: Can you bless us, so we can be cured? You know with that magic key stroke. Oh I forgot you’re not God. But we wish you were. Keep up the good work and stay well or as well as possible.
Your very first question is poorly phased. The vast majority of transgender folks identify as either male or female.
There are a small number of people who identify as neither male nor female. Some call themselves non-binary; others prefer other labels. Many of these folks do not identify as transgender.
Much better: Male, Female, or Other.
Thanks. I fixed it and will use that in the future.
Hi Cort I am a 75yr old Australian , my journey into CFS began in 2002 when under a lot of stress I came down with a very severe flu like illness ,but more severe than the Hong Kong flu I had in the late 1960’s it lasted 8 to 10 days red spots appeared on my torso after about the 3rd day ,couldn’t eat for nearly 7days . Went to two doctors,the first gave painkillers which didn’t touch the headache, the second gave antibiotics flagyl and doxycycline but no diagnosis from either doctor. At the time I thought I had fully recovered however the hills seamed harder to walk up, then within 6months felt unwell and went to doctors, told doctor family history of mother with thyroid problem, test came back hyperthyroidism and sent to specialist, diagnosed viral sub acute thyroiditis and was given 10mg 3x daily prednisone and 40mg inderal daily and tapered down over 2months, felt good on medications but once ceasing was having trouble with shortness of breath on exertion. For over 6months kept complaining to doctor and was sent to lung specialist in mid 2004 ,Lung function test showed normal lung volume but obstruction partially reversible with steroid puffer,specialist said cause was having been a smoker,didn’t have any problems before viral illness and was playing regular golf. He commenced me on Symbicort puffer in July 2004 and within one month end of August I once again came down with the same very severe viral illness, Went to doctor and given same antibiotics and spots again appeared about 3rd day and again lasted same length of time and symptoms .Before coming down the second time I had a lung CT which read changes of emphysema with bullae formation and fibrosis. The fibrotic changes are noted in the mid and lower zones. Additional focal fibrosis and mild atelectasis is noted at the right lung base posteriorly.This could suggest post inflammatory change. Associated extension to the subpleural aspect is noted on the right side in the mid lung, 2IMA16.This again could suggest previous lung infection at the subpleural aspect. As you can see the previous lung infection would be referring to first viral episode in 2002. The Symbicort (steroid) while helping with the inflammation in my lungs from the virus it was also affecting my immune system as did the prednisone given to me for viral sub acute thyroiditis which allowed the virus to spread to my lungs on ceasing the steroid. As I said earlier one month after starting Symbicort I came down with the same virus 2004 .I went on to get recurring viral attacks 2007- 2012- twice 2013 in which year I was prescribed prednisone as my breathing deteriorated markedly and could no longer mow my lawn after 2012 virus. I then came down with the same virus 2014 each of the last five times I went to hospital very sick and given painkillers in drip and sent home no diagnosis and when I tried to bring up the subject of the recurring illnesses with doctors they wasn’t interested. At the time of all the viral attacks I didn’t know what the recurring illnesses were until in 2017 I asked for my medical records from 2003-2006 which had my 2003 viral sub acute thyroiditis and also 2004 illness which diagnosed me with viremia and asthma,Would have been nice if the doctor had told me. After 2006 moved from the city to country, cleaner air for lungs but worse treatment from doctors and hospitals as I said earlier the five times I went to hospital and no diagnosis,even though my bloods all ways showed low lymphocyte. After 2014 viral attack I changed doctors and tried to explain what had been happening, for the first time she spent time listening, and then said, there’s something else wrong with you it’s not all your lungs,(even though the virus has damaged them as showed by CT ).Finally something I had suspected since 2012 when before that viral attack I could still manage to play 9 holes of golf and mow the lawn, but all ways had to do things in the mornings as not much energy after lunch ,but after viral attack couldn’t play golf or mow lawn. My doctor sent me to a neurologist who done a lot of blood tests,Most normal but one test (which is highly relevant) ANCA test. ANCA Screen Positive. Pattern P-ANCA. Titre 80. Myeloperoxidase Ab (BioPlex) High 5.9 Index below 1.0 . Antibodies to Vasculitis ,which now makes a lot of sense. During these flares of viral attacks the virus is attacking ,I think the endothelial cells of the blood vessels through the ACE 2 receptors causing inflammation and Vasculitis. This would explain the aches and terrible uncomfortable feeling in the gut and low down also the splitting headache. Sent to rheumatologist but would not do anything as ESR and CRP levels were low,(by then no longer in flare,also people with CFS do not show rise in ESR or CRP.) Unfortunately for me by then I was more determined to find out what was wrong with me. Then in 2015 I seen an Integrative GP who prescribed me 100mg Pregnenolone and 25mg DHEA which I took for 1month ,had a bad affect on me and she stopped the Pregnenolone cold. At the time I was unaware it is a steroid similar to Prednisone. It’s lasting affect on me was major,I was a lot weaker,lost my appetite (which had prior got worse with each viral flare) completely, was eating only to survive, also became more nervous. Still trying to find reasons for the way I was I got a referral to an endocrinologist as my hormone levels were very high, testosterone level was 40.8 top of range 29 .After first visit with him he thought the recurring illnesses were either Vasculitis or Infectious in nature (how right he was.) Unfortunately for me however,even though I had very high testosterone levels I also had high SHBG levels which ment very little of the testosterone was available to tissue. Because of the virus the liver was putting a protein on most of my testosterone as my body could not use it all. So what does the endocrinologist do! He prescribes me a testosterone injection which severely affects me, made me so nervy that I couldn’t stand having people around me. This went on for 3months ,and when I told him what happened he didn’t want to know me anymore and no longer would give me an appointment. That was in 2016 , it wasn’t until 2017 that I started to do a bit of research on my wife’s work phone and thought I had all the symptoms of CFS , but each time I brought the subject up was told it doesn’t exist and wasn’t until I visited a naturopath in 2017 and was told I had reactivated EBV. After getting my own I phone in 2018 I started doing a lot of research I to viruses, Prednisone, Symbicort and hormones and all the abnormal pathology tests and everything started to make sense. In 2018 I asked for a EBV serology test (the previous one in 2014 showed IgM negative).This time the IgM was Equivocal (probable false positive).The test is correct and when taking the test result to a Infectious disease specialist saying I had CFS as a result of reactivated virus ,he said the test is unreliable and that was that. Seen another Infectious diseases specialist early 2019 and got the same dismissive treatment. Being a stubborn person got a referral for a Heamatologist ,for some time felt the blood flow had something to do with this illness. When he was writing pathology blood tests persuaded him to add a PCR .EBV test. Got the result back. Nucleic Acid Detection. Epstein Barr Virus DNA.- DETECTED. EBV DNA Below 500 copies/ ml. I in the past have had a number of Immunoglobulin test done the first in2014 and all have been rising most notably after the Pregnenolone 2015 and after the testosterone injection 2016 . Serum Immunoglobulin test may 2019 . IgG 9.7 (6.6-14.4) ***IgA 5.2 (07-3.6) ***IgM 1.9 (0.3-1.4) . Pathology report suggested serum protein electrophoresis test. Serum Protein Immunofixation Studies. Interpretation of abnormal pattern indicating the presence of oligoclonal banding suggestive of a response to infection or inflammation. Cumulative Serum Protein EPP test showed Interpretation of abnormal pattern indicating the presence of oligoclonal banding suggestive of a response to infection or inflammation. Also Total Lymphocyte Count test. Comment: The majority of lymphoid cells are T cells. The B cells present are polygonal. There is no evidence of lymphoproliferative disorder. Conclusion: CD8+T-cell Lymphopenia. Had repeat tests done October 2020 .The comment and conclusion from pathology reports same but Recommendation: As well as viral serology,correlate with ANA , s.ACE, s.Zinc. That is my latest pathology tests to me shows my immune system is fighting I am not sure if is just EBV or another virus also as some of these tests are not all ways reliable. I earlier in the year rang the HHV6 Foundation in America and spoke with a young girl and gave her my early medical history and the steroid treatment I had which made things worse especially my breathing after prednisone treatment for viral sub acute thyroiditis and she was of the opinion it was HHV6. The American infectious diseases doctor in 2010 spoke about CFS and Prednisone saying active virus +Prednisone =CFS. He said doctors give it out like holy water, but he’s seen hundreds of patients come down with CFS after Prednisone treatment. Their is something very strange going on here, for a start doctors not wanting to diagnose CFS so the public doesn’t know just how many people have this terrible disease in various stages of reactivation just waiting for a doctor to prescribe Prednisone or steroid to go deeper into CFS. Then after they realize they may have done something they can’t reverse they admit nothing and close ranks and protect each other instead of at least trying to help their patient for whom they took a Hippocratic oath to protect. In America there is a book by Charles Ortleb, CFS the Cover Up,not available in Australia, read the preview and makes a lot of sense to me. Everything is so false today, the powerful in this world governments and Big Phama have not wanted to spend the money on research on these viruses, for if they did find a treatment it is probably the cause of many of the chronic and autoimmune diseases it may put a lot of doctors out of work and Big Phama profits would nosedive. I am not sure if is just EBV or another virus also but I do think the virus or viruses are causing problems with the endothelial cells of the blood vessels through ACE 2 receptors and immune response causing inflammation and therefore interfering with micro circulation also causing problems is protein antibodies making blood thick and sticky (why ESR test no good).Also with micro circulation problems is oxidative stress problems not being able to take blood away effectively from narrowed inflamed and possibly damaged endothelial cells. Makes sense why doing to much makes worse. Sorry I have dragged it out so much have been dismissed by so many doctors and some that made me worse just had to get some,not all out. I am mostly housebound and angry at the way we are all treated. Especially when I think about the Australian so called CFS expert Andrew Loyd who done nothing but hurt people with his CBT – GET and has after all this time finally been discredited. He should be made to publicly apologise . I could go on but I will finish with I think my multiple episodes of viral flares makes a case the virus was all ways there.. Dennis