Best products from r/cfs

See a different GP each time until you lock onto a good one, quite possibly one that is the hardest to find appointments for. I've had more luck with younger docs over the years, anecdotally. Still, there will probably be nothing at all they are allowed to do for you, with CFS, presuming your standard, basic blood tests are even vaguely normal. In my health authority area, anyway (Warwickshire), supplements (e.g. CoQ10) that were previously prescribed are now blacklisted (and ADHD provision no longer exists at all, but that's a separate whinge).

You'll need a good, very supportive GP on your side if it comes to claiming Employment Support Allowance (the forms and 'medicals' for which seem tailor made to have blind spots for CFS). If you thought convincing your family/GP was hard...

Anyway, if (as I see from some of your other posts) you do have POTS symptoms, you may be able to get specialist treatment and prescriptions to help with that. A friend of mine, up north, does, although I think she was perhaps a little lucky, postcode wise.

Regarding CFS in general, I've recently seen it described as a immune mediated brain disorder with strong links to the gut, and I quite liked the ring of that. There are usually major metabolic disturbances, if one is able to look closely enough, high oxidative stress (directly induced by exercise), inflammation, dysautomnia, gut biome imbalances/derangement, etc. Point being is that it seems to be a multi-system issue, where the body's balance is turned inside out, like an inverted umbrella.

Each of the previously mentioned components (nervous system, immune system, gut, metabolism) are kind of like like spokes that have been bent backwards. This is good, in that you can attack the problem from many potential angles, and possibly get little benefits from each intervention. But to put the whole lot right at once may require much more effort and co-ordination, as with an umbrella, and may be more prone to breaking in future, it seems (or already was, but hadn't been stress tested previously).

Edit: oh, and most mental/brain diseases may turn out to be similarly linked to gut dysfunction, it seems, for recent research directions. With depression possibly a an inflammatory state of the gut, feeding back to the nervous system, and back around, in a closed loop. So that diagnosis may not be far off, even if the available treatments still are.

Some specific notes:

Don't be encouraged to push yourself into exercise (via GET, etc), even when if you feel spontaneously great. A low level, and outside time in trees and sunlight are great psychologically, hormonally. Don't turn down CBT (or anything) out of hand, if offered. Show willing, if able, I guess. I've had neither, but if anxiety/thought processes are tripping you up, in particular, then sensible to address them. Meditate, even. Certainly stress can be a big drain of bodily resources.

CFSs are in desperate need of the nutrients (minerals, vitamins) from vegetables. The 'Free From' supermarket range is a great concession to the acknowledgement of food intolerance, and fantastic for those who have Coeliac disease, but tend to be even worth than regular processed foods, in terms of being empty calories, very poor nutrient density, etc. Try to make a best effort to increase intake of any vegetables that you already like, and find ways to prepare new others that might be more palatable. It's a long, ongoing process and it's hard work, at first. I only managed to start doing this properly myself after dietary exclusions gave me a whole new lease of life, a couple years back. And preparing food does use a substantial proportion of that extra energy, on most days, but worth it. Basically, something like paleo, or "stone age diet" seems to be the way to go, which aren't far off SCD (specific carbohydrate diets).

Get nutrients from a careful supplement program too (essential if diet is poor). Can be complex to implement with multi-faceted personalisation that you'll need to implement. Check out Dr Sarah Myhill. She's based in Wales, the only UK CFS specialist doctor I know of who seems to be worth a damn. I kick myself that I didn't manage to book in with her a few years back, before she became too inundated, after her book: "Diagnosis and Treatment of Chronic Fatigue Syndrome: Mitochondria, Not Hypochondria" - highly recommended, and much of that same great, well rounded info is available via her website.

To go into even more detail, including most of the many relevant supplements and an overview of the various theories and treatment plans for CFS, check this cheep ebook.

While bacterial and yeast overgrowth of the upper gut definitely does happen, it seems to be something that is overly jumped at, perhaps because of how uncomfortable and distressing GI symptoms can be. Certainly an aunt of mine, in the USA, claims to have been cured from her years long bout of fatigue after being treated with a targeted prescription anti-microbial/anti-biotic (Xifaxan, I think, plus some other things), but nuking the whole gut seems like burning down a village to save it. I've not found sufficient evidence for such an extreme measure, myself.

I've had IBS (D and C), related to food intolerances: diary, egg, yeast (confirmed by Yorktest IgG testing) and most notably, histamine intolerance. Cutting high histamine foods is one of the trickest, but easily most powerful interventions I've done. A rash after eating yogurts (a fermented product) flags this up for you too, in my mind. High (serum) histamine (via intolerance or mast cell activation disorder - MCAD) can cause all manner of crazy symptoms, from dysautomnia, halucinations, sleep disturbances, rashes, anaphalaxis, etc. If the upper gut is damaged and liver metabilism is impaired then histamine might not be getting broken down fast enough, it seems. Also, dysbiosis can contribute massively, and in any case, it seems quite common in CFS, especially along side other food intolerance and/or 'leaky gut'.

I'm suspicious of anti-acids - stomach acid is needed to sterilize ingested food, to help keep the small intestine free of microbes and for digestion of food. Poor break down may slow transit and feed overgrowth/imbalance, causing bloating (and ironically heart burn).

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Sorry, I've blurted a whole lot there. Hope some of it is useful and good luck. Given that you've not been ill for long, and you had sudden onset, I think your chances of spontaneous recovery are probably as good as they can be, anyway. And the field of study and treatment currently seems to be spooling up quite fast, now. :-)

Mine:
1 SleepPhones wireless headphones is definitely the best single thing I've got since getting sick. Listening to audiobooks has been one of my main activities but I'd end up with my earbud wires wrapped around my neck. These I can sleep on in any position very comfortably and pull them down over my eyes when it's too bright. Must have.

2 on that note, an Audible subscription is also really good. You can gift books individually or a couple months of subscription time.

3 This heating pad is the best one I've found after much experimentation. Heats up really fast to a good temperature and is very flat flexible so you can wrap it around aching muscles.

4 This massage stick is also very nice for especially achy muscles that are hard to get into. It's really helped me break up some of my worst spots.

5 My wife bought and hung this hammock for me so I could get outside a little. Cheap, works well, and lets me see the sky a little again.

6 A kombucha brew kit has been pretty fun for me, doesn't take much effort for a good payoff, and supports healthy gut bacteria. There's not much more to it than making tea and mixing it in jars with fruit. Plus a lot of waiting around, but we're doing that anyway...

7 Finally, and this one is weird as a gift but it's still helped me a lot, is a subscription to Freshly. Freshly is a weekly food delivery service like Blue Apron or Hello Fresh, but they send you complete ready to heat meals instead of ingredients to cook with. Very high quality fresh food. I think of it as heating up really good leftovers. Been super helpful for me as cooking and doing dishes became too difficulty.

Number one: Having a good quality sport percussive massager has made a huge difference for me. I can use it to help stimulate weak muscles, to help my balance, or to work out morning stiffness. Using it every few days has actually helped with my mobility a little bit. It's also nice, because it's something you might actually be able to help her with yourself.
I have good results with this one: https://www.amazon.com/Thumper-E501NA-Sport-Percussive-Massager/dp/B009GEQNJS/ref=sr_1_2_sspa?ie=UTF8&qid=1521764036&sr=8-2-spons&keywords=thumper+sport&psc=1&smid=ATMMZ66HXOJEM

Personally, I love having my phone in the shower or bath. This may be crazy, but for years now, I've been safely bringing my phone to the tub in a sturdy ziploc bag. I specifically use the good quality ones, and I've never once had a leak. I've also attached sticky hooks to the wall at strategic points, so I can hang my baggie'd phone on the wall where I can see it (hanging by a hole on the not-sealed part of the bag, of course).
Not for everyone, but I've gotten loads of use from this. If you're determined to do the grown-up thing, and get something actually designed for that purpose, you might have good luck finding a waterproof phone pouch, designed for taking swimming. Many of them can also be hung on the wall, and can have good touchpad access.

I also get a lot of good use out of my laptop/bed desk. I've also had people recommend trying those mirrored glasses, that let you see your laptop screen without scrunching your neck down, though I haven't actually used them myself. Like these: https://www.amazon.ca/Prism-Glasses-Eye-Bed-Spectacles/dp/B000RZNBF4
I've used VR a bit, and I don't think it's great for movies. It might also be less than ideal for gaming, since you're supposed to move around.

Lastly, this one's not exactly a romantic present, but having an electric can opener has also been really great for me. I didn't realize how much I needed it until I had it. I still get my guy to open the jars though. :p

Whatever you get, I hope you guys have fun. :)

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.

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/

It sucks. Body temperature problems have been a challenge for me. I got a heated foot bath, which really helped. If you put hot water in a bucket and soak your feet in that, it's nice, but the water will cool off fairly quickly. There are good and fairly inexpensive (~$80 USD) foot baths on amazon that will heat the water and keep it at a nice temperature. Here's one for $68 that looks similar to the one I got a few years back: https://www.amazon.com/TENKER-Massager-Heating-Rolling-Temperature/dp/B07HCBGLFC

I've used socks and heating pads, but the foot bath was the most effective. I hope you can find some relief.

Damn. It's hard for me to give advice because I had different infections from you.

I bought this book by Sarah Myhill here:https://www.amazon.com/Diagnosing-treating-Chronic-Fatigue-Syndrome/dp/1781610347/ref=sr_1_1?ie=UTF8&qid=1499729722&sr=8-1&keywords=mitochondria+hypochondria

I've made HUGE progress with the recommendations in this book. However, googling RMSF comes up with a bunch of stuff related to Lyme which is extremely serious. You will need to treat the RMSF and ME/CFS together in order to get better and you can't do much which means you will need help.

Try and find someone who can help you read the book. If you can't, just work through it slowly as much as you can. The first thing she is going to recommend is that you get all your meals delivered and made for you if you aren't doing that already and that you switch to a paleo ketogenic diet.

Sarah is really good at what she does. She was profiled in the documentary "What about ME?" which you should also watch and get your close family to watch (in case they need help to understand) if you can: http://www.imdb.com/title/tt1770767/

First tip is to shower less.


How to shower less:
Buy a portable bidet to wash over the toilet. This thing makes you feel so fresh. You can fill it with warm water and soap. Also just wonderful during periods. I feel like everyone who menstrates or poop should have one regardless of health!
In Canada: https://www.amazon.ca/Brondell-GS-70-GoSpa-Travel-Bidet/dp/B008CSDKSQ/ref=sr_1_3?ie=UTF8&qid=1549986492&sr=8-3&keywords=portable+bidet
In America: https://www.amazon.com/Brondell-GS-70-Portable-Convenient-Capacity/dp/B008CSDKSQ


Wash hair in sink, some people use dry shampoo, I've shaved my head or done an undercut so that it is easier to manage (Plus it jives with me)


Wash armpits, etc with a facecloth at the sink.


Tips for when you have to shower:


I sit on the floor of the tub. I have a towel laid out on the floor for when I get out and need to lay there to recover my strength.
I have a grab bar in the shower. Honestly with weak arms and weak everything in the bath, my partner still helps me out of the tub.


If you are helping:


Make it sexy/intimate or silly vs caregiver-y? Say you want to soap her up, give her a head massage if you are shampooing. My partner helps towel me off sometimes so I can get to the couch to lay down sooner.

There are a number of great documentaries about ME/CFS. “Forgotten Plague” Forgotten Plague Doc also on Youtube. “UnRest” by jen Brea is an award winning ME/CFS documentary, “ and “I Remember ME” is another ME/CFS Doc from a few years back. There is also a YouTube channel “Open Medicine Foundation” that has tons of videos about ME/CFS.

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

I know this is not quite what you asked for, but... I have one of these for days I am well enough to recline, but not well enough to leave bed and go to my reclining chair (which reclines less far than I can comfortably do on this one):

https://www.amazon.co.uk/gp/product/B07CSH9DLR/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I further pad it out/change the angle somewhat with additional pillows, sturdy, thick, memory foam ones. It does wonders for me. It also really helps with sleep hygiene, in the sense that day time is recliner wedge time, even if I recline all the way back on it rather than making it a bit more upright with more pillows, and nighttime is laying down and sleeping time.

You read a story like this, and the jokes just write themselves.

Align is a probiotic, right? I've been using this stuff and it does seem to help with my minor GI issues.

https://www.amazon.com/Forgotten-Plague-Ron-Davis/dp/B01AT28I84