(Part 3) Top products from r/cfs

In addition to the other great suggestions here I also like these things:

1. This Travel Pill case it is large enough to hold 4 large pills per section, and has 4 sections per day.
   
   
2. The Flip and Tumble Grocery bag . This bag holds a surprising amount, and because it fits on the shoulder, not carried in the hands, it makes it easier to carry.
   
   
3. Table Mate tray table this is the cheaper version of what others suggested, and is a bit less sturdy, but if you are on a limited budget, it works great.
   
   
4. OXO Good Grips Products I love the can opener, but any of their Good Grips products work great. They are specificly designed for people with arthritis.
   
   
5. I feel the most important one of all, though, is a fuzzy comfort blanket . People underestimate how much better you can feel just from wrapping yourself in something soft and warm for a bit. Even if you still hurt, it can make you feel like you can cope with it better.
   
   
   EDIT: I just thought of another thing. The whole homemade coupon book is cheesy, but the truth is that offering to help them with housework, do some laundry, or even just spend time with them is an awesome gift in most cases.

I saw your post and almost didn't make a comment because what I am going to say is pretty out there, but given that your CFS started with a viral issue, there's something you should know about. I have seen many others with a similar story (history with a viral issue often coupled with thyroid issues followed by a chronic mystery illness) and have been PMing them instead but I think a lot of people could benefit from this information. It is at the very least an extremely low risk treatment that is relatively easy to integrate and can be done alongside other protocols, and has helped a lot of people with a variety of chronic illnesses. Check out Anthony's instagram page for personal stories.

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As I said before, it's pretty out there, but so far his information has been consistent with or added insight to everything I've learned as I've undergone treatment. It is consistent with so many particular things too, like elevated homocysteine levels, MTHFR gene mutation, borderline lyme test, and a whole host of symptoms.

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The good news is that all that is required to treat the underlying conditions is natural supplements and changes to diet. I've been on the protocol for six months and have stopped all other treatment, and while i am not healed, I am definitely seeing significant improvements. The usual time table is 6-12 months too, so it is a very good sign that I'm seeing progress this early. Also interesting given Anthony's theories that the only other time I felt this well was when a doctor in Utah put me on an antiviral (acyclovir).



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Here is a link to the book (he also has a recipe book that also covers a lot of the information in the first book), and then here are a few podcasts in order of importance:

Epstein Barr Revealed

Healing from Mold Exposure

The Unknown Cause of Lyme Disease

Heavy Metal Detox

MTHFR gene defect


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His site is www.medicalmedium.com and he has a bunch of useful info on there, like links to preferred brands (no additives and the effective forms) of supplements.


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Anyway good luck with everything and feel free to reach out if you have questions.

Sexplanations is a great channel and I'm so excited to see Dr. Doe make a video about Disability and Sex. It's a pretty giant overview, but hits a lot of important points that are applicable to CFS. This is a topic that's come up repeatedly on the chat groups and I thought it might be nice to bring here.

I especially liked her clarification that people with disabilities can be gay/straight/bi/poly/trans/asexual/kinky/vanilla/whatever - that sexuality is not defined by disability. As I've gotten to know people from this community (r/cfs) I've met people with many different sexual orientations and preferences.

Dr. Doe also talks about how people with disabilities are often desexualized which is something I certainly found as I got sicker.

And I appreciated her mention that some people fetishize disabilities in a harmful way. When I first started dating post-cfs I found this quite a bit (ick!)

I wish she had talked a little bit more about tactics for us to work around our physical limitations in our love lives. I've found this community very helpful in that area but haven't seen it talked about publicly very much. Perhaps in a future video.

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As an aside, the book that Dr. Doe recommends at 5:50 (The Ultimate Guide to Sex and Disability) was actually shown to me by someone on here a while back. It's a good book and does a nice job of including energy disabilities. If you're starting to figure out how sexuality/dating/sex works with CFS it's worth checking out.

Links to the book:

• US Amazon
  
• UK Amazon new or used
  
  edit: words brain hard fog GAH

I’ve collected these over the past couple of years, and these are all of the best ones I’ve found:

https://www.cdc.gov/me-cfs/index.html

This one is very short and effective. It helped my extended family understand the severity of ME/CFS:
http://solvecfs.org/wp-content/uploads/2018/01/SMCI_infographic-Dec2017.pdf.

This book helped me and my family understand, but obviously it’s a much longer read:
https://www.amazon.com/dp/0897932803/ref=cm_sw_r_cp_api_bOIxBb3163914

This one Is helpful for friends and family of people with ME understand better, as well as helpful for people with ME to get a better understanding of the condition and experiences patients go through:
https://katarinabrandt.wordpress.com/2018/03/25/helping-me-helps-all-of-us

https://www.meaction.net/resources/reports-and-fact-sheets/

https://health.ny.gov/diseases/conditions/me-cfs/

http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

This one has good guides in case need to be in the hospital etc but also is super helpful to help people understand your limits and light/sound sensitivity: https://www.thegracecharityforme.org/documents/

Hi, I'm really sorry to hear what you're going through.

My CFS occupational therapist suggested to me to try mindfulness, specifically mindful breathing, and I started that almost 2 years ago now, just taking 5 minutes out of my day at regular intervals to sit, eyes closed, and focus on the breath. It really helps to recharge the batteries.

This led to an interest in meditation in general and I've progressed further and further with it in that time and now practice about 2 hours a day, using guided meditations on the apps headspace and insight timer.

My main focus now is the practice in: "The Mind Illuminated: A Complete Meditation Guide Integrating Buddhist Wisdom and Brain Science for Greater Mindfulness"
https://www.amazon.co.uk/dp/1501156985/ref=cm_sw_r_em_apa_i_gaWZDb14KFXB0

I cannot overstate the effect that meditation has had on my mental well-being, energy levels and is integral to my pacing. I really strongly encourage you to look into it and I hope you can find some peace .

It's not a cure and I still have lots of bad days, but I feel like I've made some progress in the last 3 months or so at least.

I found physical therapy made my fatigue worse. Yes I got stronger and able to stay on the treadmill longer, but it translated into more time in bed when I wasn't at therapy.

The widespread chronic pain and migraines can be controlled through appropriate antidepressants. Antidepressants will also help with anxiety. They can also help with sleep issues.

Have you tried birth control pills to regulate your period? If you do ask for ones that carry the least risk of blood clots. While all of them can increase clotting some are worse than others. I think it's more related to the type of progesterone as opposed to the dosage. Injectable birth control would also reduce your periods.

Have you been tested for thyroid antibodies? They ruled out thyroid in my case until I pushed for an antibody test. I read a lot of books about thryroid and pushed to have this test done despite normal TSH/T3/T4 because my symptoms fit so well. Found out I had Hashimoto's and now see an endocrinologist. He isn't giving me anything for it but I found out selenium has been proven to help people with Hashi's, and it has helped me a lot.

Consider that you might have food sensitivities/allergies that are making you ill. Have you tried an elimination diet? They're not easy to do but you might learn something. I actually went through the whole "yeast elimination" thing for a few years. Here is one book on the subject. They can't really test for yeast, but if you follow the recommendations and take an antifungal and feel better then it's probably yeast.

Related to thyroid and yeast, people have reported success with the GAPS diet. I haven't tried it so I can't say how well it helps.

As for sleeping, I just reread "Sleep Right in Five Nights". The section on medication is dated at this point, but all the other tips about managing your sleep are still valid. Counterintuitively, sleeping less will make you sleep better and you will feel less tired. But I understand what it's like to be so tired that you need to nap twice a day even after a full night's sleep.

I am sorry you are suffering. Being sick sucks. Good luck.

I've barely started reading it, but someone here suggested the book "How to be Sick" by Toni Bernhard.

I didn't have any long-term friends when I got sick, because I'd gotten sober just 3 years earlier and had to stop seeing pretty much all the friends I still had. Then I moved to a rural area 1300 miles away.

What helped most was (accidentally) finding a forum with people who had a similar interest. I made a post about a problem I had, and stuck around to read other posts because I found it interesting. Because I went regularly, I ended up becoming friends with several other regulars. We don't chat much, but they are available if I need them (which is both less than I want, and less than I used to need).

This is the one: https://www.amazon.co.uk/Learned-Optimism-Change-Your-Mind/dp/1400078393

Good luck. Also, for the depression cure, one of the steps he recommends is exercise. Obviously that won't work for us. Everything else he recommended helped me, even CBT. Note that this is NOT the same CBT that was done in the PACE trial.

Also, Myhill's book on Mitochondria really was a game changer for me. It took me almost a year to read it because on some days, I could only read a paragraph at a time. I don't know how much research you've already done, but at the time, I really knew nothing about ME/CFS and the book was a huge help. https://www.amazon.co.uk/Diagnosis-Treatment-Chronic-Fatigue-Syndrome/dp/1781610347

virtual hugs

Say 'Hello' to my little friend:

https://www.amazon.com/gp/product/B000AEGCUI/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

Might be too wide to fit in a tub but works great in a stall.

Definitely worth looking into mast cell and histamine issues if Zyrtec helps you. Have a read of this https://www.amazon.com/Never-Bet-Against-Occam-Activation/dp/0997319615 and check out his YT video if you want to learn about MC disorders.

pitsspecials is probably a sockpuppet of "sciencewatcher". He talks just like him. Just ignore him. He is just here to promote his own brand of quackery. He changes username whenever his current one falls in disrepute.

Edit: his name is David Jameson, he has published a book on ME/CFs titled "Mind-Body Health and Stress Tolerance" (no further comments needed) and he also has a homepage: mind-Body-Health.net

He is also prolific editor on Wikipedia, working tirelessly to ensure that CFS is portrayed in line with his brand of quackery.

Support group


https://www.facebook.com/groups/435645003161721/



Book


https://www.amazon.co.uk/gp/aw/d/1781610797/ref=dbs_a_w_dp_1781610797

http://www.amazon.com/Root-Canal-Cover-Up-George-Meinig/dp/0945196199

I prefer wax earplugs myself.

I had 'CFS' a couple of years ago, and it cleared up immediately with tiny amounts of desiccated thyroid. I'm now taking quite a large amount of desiccated thyroid and thyroxine, but I'm in apparently perfect health. (Full time job, cricket both days of the weekend). No symptoms of thyrotoxicosis at all.

Even my GP agrees that I seem to be fine, although he's worried by my 0 TSH and high Free T4, but every time I try to drop the dose the lethargy, depression, aching muscles etc come back.

Could you tell me what you think of Gordon Skinner's 'Diagnosis and Management of Hypothyroidism'? It's aimed at doctors but very light-hearted in a terribly serious way. (https://www.amazon.co.uk/d/Books/Diagnosis-Management-Hypothyroidism-Gordon-R-B-Skinner/0954774515/ref=sr_1_1?ie=UTF8&qid=1502359925&sr=8-1&keywords=skinner+diagnosis+and+management)

Skinner reckoned that you could have the symptoms of hypothyroidism without having funny blood hormone levels, and that this condition would respond to thyroxine. He published an open trial with stunning results, which has sunk without trace. There was an attempt at a PCRT by some brave Scottish GPs, but they buggered it up and got no effect.

He is far from being the only person to claim this. I originally came upon and tried the idea through John Lowe treating Fibromyalgia with T3, but there are many others. (https://www.amazon.com/Metabolic-Treatment-Fibromyalgia-John-Lowe/dp/0914609025) Despite being a chiropractor, John Lowe seems to have been the most careful and thoughtful of all the people who've ever looked into this, and he also published papers, but all in bloody chiropractor magazines that I can't find.

In fact it looks to me as though the balance of the evidence in the medical literature is in favour of the idea.

I actually made a subreddit https://www.reddit.com/r/thethyroidmadness/ to post evidence and arguments to, but no-one's interested, so it's just a list of most of the things I found.