• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. F

    Is Apheresis an effective treatment for Long Covid and ME?

    Thank you, Lenora. I know Martin from this forum, a TV documentary he was included in and I'm following him on Instagram. His channel there is "paused_me". Unfortunately he hasn't improved much but is in a relationship. and does a lot of media work for CFS.
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    Is Apheresis an effective treatment for Long Covid and ME?

    I did 4 treatments( 2 in 2022 and 2 in 2023). The big and only improvement is cognitive. My working memory is improved and I am better in my job in IT. But if I overwork my energy envelope I'm punished as always. After the last session some months ago I've decided to stop altogether as there...
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    Is Apheresis an effective treatment for Long Covid and ME?

    @tyson oberle I've been tested for microclots by Miss Dr Jaeger. I don't think they treat you otherwise. But in CFS the results aren't as obvious as in Long Covid. I thought that my results wouldn't suggest an apherese treatment but Miss Dr Jaeger thought that it would :) Therefore the...
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    Is Apheresis an effective treatment for Long Covid and ME?

    That would be great :thumbsup:
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    Is Apheresis an effective treatment for Long Covid and ME?

    @tyson oberle Well... I've had two treatments. Each treatment takes approximately three hours. I haven't had massive side effects afterwards. For two days I was feeling rather empty, tired and depressed. So mostly emotional. What has improved? Beforehand something about my background. I've got...
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    Is Apheresis an effective treatment for Long Covid and ME?

    I start tomorrow with my first treatment, Second treatment on Friday. Then I decide if I repeat the treatment next week( also Tuesday and Friday).
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    Can anyone have regular good sleep without a medication to help?

    I've take every night 4mg LDN + 5mg Melatonin and a weak sleeping aid like Betadorm. Usually I put a timer for half an hour on my iPhone while listening to some audio book. Fortunately I rarely reach the end of the timer before I fall asleep.
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    Is Apheresis an effective treatment for Long Covid and ME?

    In October I'll have an Apherese appointment in Mülheim. Afterwards I'll tell you how it went...
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    Is Apheresis an effective treatment for Long Covid and ME?

    @Akasha It would be great if you could write about your experience in Mülheim. I've got an appointment in October and I'm really interested about it.
  10. F

    Advance decision / living will

    Only what you deserve :thumbsup:
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    Advance decision / living will

    @Wolfiness I hope I don't stress you with my post but your blog article "Care" has impressed me very much. It's so well written with such an objective depiction of your situation that I can barely believe that you are not a healthy professional in her pomp. I wallow daily in self-pity...
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    Mental health: Is ME/CFS Brain Fog consistent with an Attention Deficit Disorder?

    I’ve got ADHD. It has influenced my life in a big way… mostly negative. Ritalin has helped completing boring tasks but it’s in no way a fix. In my opinion CFS and ADHD have very little in common. Probably the biggest similarity is that no one believes you that it’s a serious condition. In...
  13. F

    Has anyone had a Covid vaccine yet?

    I'm also full vaccinated. First with Astra, yesterday with Biontech. After the first vaccination I had slight symptoms...for maybe three to four days. Like a mild flu. The second vac had as of now no symptoms.
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    Question on PK diet

    @anne_likes_red I don't think that protein normally kicks you out of Ketosis. Unfortunately I don't like eating meat except of my daily polish sausage - and once a week a filet steak. I prefer cheese and nuts.
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    Question on PK diet

    Thanks. The problem is my(our) inability to tolerate stress. Every new theory creates uncertainty and therefore a mini-crash. Perhaps this is the reason why sometimes in our circles the discussions get so heated: everyone tries to defend their approach to avoid a PEM :D
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    Question on PK diet

    @Learner1 Thanks for your reply. Unfortunately in my current state I'm not able to discuss this topic in depth. One point where is disagree is "To stay in ketosis, one needs fat to be high" To me the important factor seems to be the amount of carbs per day you ingest. This is from the Keto...
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    Question on PK diet

    I don't know for sure if I'm in Ketosis but it's highly likely. Regarding protein: this is a misconception. The important factor is the amount of carbs per day. It's not a fixed value but 20g is a level which keeps almost everyone in ketosis...
  18. F

    Terrible fear and panic. What helps? I can not anymore

    @Lissi90 I'm also from NRW but without Covid. I've won my CFS ticket eight years ago with an EBV virus from my son. Anxiety and hyper sensitivity is also a problem for me: some days I can't tolerate noise or smells or bad news :) This reminds me of an old Woody Allen joke: "Just because you're...
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    All of a sudden when i say or think a word i see it : (

    I know but as always in CFS: Everything changes and always stays the same ;) But it's for the best to vent and always remember the wise words of Dr. Monty Python: Life's a piece of shit When you look at it
  20. F

    Best theory so far?

    Autoimmune reaction which results in a metabolic trap.
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    All of a sudden when i say or think a word i see it : (

    I don't know exactly how you feel but I've experienced an auditory hallucinations some months ago and it was frightening. While lying in bed I heard a loud bang near my ear. Like an explosion on New Years day. So I wish you the best from my couch and "Hang tight" ... You are not alone
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    Question on PK diet

    Unfortunately I can't add anything to your mold question. But since last year August I'm eating exclusively the Keto way. This means I'm tracking my food and I stay below 20g carbs per day. I think that my food intake is almost like the classic mediterranean diet (except of my daily soya bean...
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    Individuals with mild cfs

    I've never been a severe case but mild is already bad enough :vomit: I was on the brink of getting into moderate territory while I was cycling everyday to work. What helped me the most in the last seven years: for stress and anxiety relief( had even some panic attacks): Wim Hof Method ==>...
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    ME/CFS skeptic: a new ME/CFS research blog

    Thanks for your effort!!
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    Strange taste in mouth

    I don’t have a taste, but a smell: like something in the room has burned. Years ago when it first started I tried to locate the burning item; nowadays I just say to my wife: it’s burning again :rolleyes:
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    How do you know if you have depression?

    In my opinion this is the crux with this illness: it's like walking through fog with only a candle in your hand. I've tried so many things and I can't tell you which I would wholeheartedly recommend :cautious: Perhaps NAC and over-the-counter sleeping pills :) That's what I would take to get...
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    ME/CFS and work?

    @Rebarns Wow.. I can't believe that you are working in retail. Just imagining to stand a great part of my day feels like torture. I hope that you can find a job that is more suited.
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    ME/CFS and work?

    I work full time in IT. It's a big organisation in the public sector. I've switched jobs after becoming ill. Before that I worked as a software developer for a company. Even though superficially the jobs are comparable, in real life they are day and night: compared to my pre-CFS productivity I'm...
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    What supplements & meds do we all take?

    As my symptoms of brain inflammation are exclusively reflected in low mood and energy, anxiety and the inability to tolerate any stress, I use nothing for physical pain. Even Ibuprofen is only used to lower my sense of inner agitation. NAC 600mg 3x day lowers inflammation symptoms; essential...
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    Feeling so much guilt as a mum :(

    @Jenima37 I know how you feel because I'm in the same situation with my son. He's ten now and I've already missed more or less 5 years of his life. Regarding your low mood. In my experience anxiety and depression are typical symptoms of CFS. If something overwhelms me - and it could be...