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Surprising New Data: What Really Helps Patients With Chronic Fatigue Syndrome

For the live-updated, interactive version of this infographic, click here.

Chronic Fatigue Syndrome is a puzzle. People with CFS live with incapacitating exhaustion, as well as a host of other unpleasant symptoms, and they often don’t know what to do to feel better.

But I didn’t realize how much of a puzzle CFS really was until I saw this data (in the infographic above). It is such a poorly understood condition that the treatments reported to help most are predominantly lifestyle changes, while the medical treatments are predominantly reported to produce negative effects. This would suggest that medicine today doesn’t know how to effectively treat CFS.

Here at CureTogether, 1,319 people have reported having Chronic Fatigue Syndrome, and 6,524 data points have been shared about symptoms experienced and treatments tried.

So what really helps patients with CFS? Rest, dietary changes, and meditation take top spots in patient reports.

To navigate the graph above:

The top right quadrant shows the most popular and effective treatments, and the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about (e.g. Low-Dose Naltrexone, Far Infrared Heat).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness or, in the red section, actually make things worse (e.g. caffeine, alcohol), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to steer clear (e.g. Paxil, Zoloft).

Interesting note: The one lifestyle change that doesn’t seem to help is exercise, which is an anomaly worth further investigation. There is much more to be said about CFS and response to exercise – my co-founder Daniel Reda will discuss this in a future post.

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for over 2 1/2 years now. We analyzed and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.

This is the eleventh in a series of infographics we’ve been publishing over the past few months. Of course, with each of these infographics, there is inherent bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you – or write to me at alexandra@curetogether.com.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in CFS. Thank you!


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29 Responses to “Surprising New Data: What Really Helps Patients With Chronic Fatigue Syndrome”

  1. What are all of the ways that someone can fight horrible fatigue?…

    Check out the new infographic on chronic fatigue syndrome at CureTogether – Surprising New Data: What Really Helps Patients With Chronic Fatigue Syndrome http://curetogether.com/blog/2011/02/03/surprising-new-data-what-really-helps-patients-with-chroni

  2. You’ve captioned this news as “surprising new data” but you’ll find that it’s neither surprising news nor new at all to CFS sufferers. It is of course great to find that my own knowledge is confirmed by CureTogether, but as somebody who’s had the CFS diagnosis for over 15 years[*] and been an active member of online support groups for almost that long, this is exactly what I would have predicted.

    My guesses, specifically, would have been that exercise/graded exercise therapy, caffeine, alcohol and SSRIs would come off worst – all of those are generally accepted (by sufferers) as often making them catastrophically worse. Things that sufferers generally accept as being helpful include diet changes, relaxation/meditation, and “pacing” which basically means not doing too much so “saying no” and “frequent small rests” would come into that category.

    The things I find surprising on that chart, personally, are that hydration and low-dose-naltrexone scored as high as they did. In the case of the LDN it’s something that (at least amongst my contacts) is not undertaken lightly, so perhaps there is self-selection that helps? I have not heard a lot of discussion about how good hydration helps, though personally I found it imperative, so perhaps we should spread that information around better!

    Given that the standard treatments prescribed by primary care doctors are generally exercise and anti-depressants, that chart paints a very good picture of why so many CFS sufferers have reasons to think their doctors are useless!

    Fascinating – thank you.

    r
    [*] Whether I actually have CFS is now in doubt, oddly, but I certainly have matching symptoms.

  3. [...] This post was mentioned on Twitter by Alexandra Carmichael and dreda, CureTogether. CureTogether said: Surprising New Data: What Really Helps Patients With Chronic Fatigue Syndrome http://goo.gl/fb/8K84Q [...]

  4. [...] 2)Surprising New Data: What Really Helps Patients With Chronic Fatigue Syndrome [...]

  5. I do not see guainfenesin on this graph as a treatment. I was diagnosed with fibromyalgia (FMS), not chronic fatigue, although the two are often substitute diagnoses. Someone who had FMS found this over the counter product to be the “silver bullet.” I took it and got much better, though I simultaneously lowered my physical activity (change of job). There is quite a bit about Guai on the web, and I am surprised to not find it on this chart. Maybe I didn’t not “mouse over” all the unlabled dots?

  6. As usually, these charts, which summarize so much effort and activity, are brilliant, Alex. I so respect having the kinds of users – and the *number* of them – needed to do this kind of analysis. I sleep with Edison dreams.

  7. @Ken – thanks for noticing the lack of guainfenesin on the chart. No patients have reported it yet, so I just added to our treatment survey at http://curetogether.com/chronic%20fatigue%20syndrome/survey/treatments/

    @Matthew – thank you for your kind, supportive words. We started out with 100 family and friends as members in 2008, and are at almost 25,000 now, so just keep going with Edison!

  8. Joanne Holman Says:

    For me, exercise – in moderation, has absolutely been key to reducing my achy sypmtoms and for keeping my mood upbeat. It’s tricky because I can so easily overdo, but if I take it very very slowly, I definitely see a gradual improvement. I am very surprised to see, then, that the result of ‘graded’ exercise is so low. Perhaps people don’t know what ‘graded’ exercise is? I don’t really know what it means.

    Thanks for these efforts…. to compile information from us patients!

  9. I use iodine and find this has been helpful, perhaps because it is stimulating my apparently sluggish thyroid? Didn’t see T3 up there either!

    I am one who cannot do any strenuous exercise (right now, anyway) as it worsens my sleep (even hours before bedtime) and causes immediate symptoms similar to alcohol ingestion.

    I have found out that these symptoms are likely due to HPA Axis dysfunction (Adrenal Fatigue) which I am now investigating. I suspect that I am not alone among FM/CFS endurers in having this condition.

  10. Interesting but I’m wondering why there are no antivirals or antibiotics on the treatment list. I also thought the methylation protocol was supposed to be on this?

    I participated but I don’t see references to the above. Also interesting is the lack of mention of any hormonal treatments, beta blockers.

    Unfortunately this only seems to focus on the psychological aspects of ME/CFS so I’m a bit disappointed in that because once again it looks as if this is another study implicating that ME/CFS is a psycho-somatic syndrome rather than the devastating neurological-immunological disease that this is.

    I would be interested in finding out how the sample population was chosen.

    Thank you-

  11. I am approaching the 7th anniversary of my cure from CFS and the 8th of having started it. There is a great deal of order dependency in all these things. I underwent a year of healing before I was able to start the rehabilitation with exercise, which was very important only after the healing had taken place. Elsewhere on the web I have helped thousands cure themselves with nutrients which is an exacting process requiring very specific things. For instance in 8 years I have only found 2 brands of methylb12 that work adequately to cure the problem when taken with Metafolin and adenosylb12 with a bunch of other vitamins and minerals any combination of which may be needed for any given person. Given out of order or the wrong proportions or doses they are ineffective.

    To just go buy any old b12 and take it any old way offers a probability of less than 1% of being effective. If the person chances on an effective brand and does everything right the startup effects can be so powerful as to scare the person away from doing what will work if kept up so the person reports “bad side effects” and becomes blinded to what works. A functional support group is very important in getting people through the startup phase, the slow healing and the long and difficult rehabilitation from extended periods of illness and inactivity. I can truly say that virtually all my symptoms of ME-CFS-FMS are 99-100% gone except for actual damage to my neurology from prolonged deficiencies. The most difficult thing to overcome for many are the habits of illness built up over 20 years or whatever of illness. Interestingly, very peculiar to methylb12 and adenosylb12 is that there is a nutrient specific dear and anorexia that can occur so that people tend to avoid or find intolerable the very foods that contain the two natural active forms of b12 they so desperately need.

  12. Thanks for creating this infographic! What a grand tool to be able to visualize the results of all the data collection.
    As a holistic healthcare provider, I am unsurprised to see patients reporting the negative effects of the pharmaceutical treatments. As a CFS patient, I am relieved to learn I am not alone in discovering the lifestyle changes have the greatest healing impact. Or should I state those two sentiments the other way around?
    From my study of the condition since I have been affected by it, I have been greatly perplexed to see so many trying drugs as a treatment. The bio-chemical balance in a CFS body is so delicate and precarious. Pharmaceuticals tend to be too inclusive in their impact on body systems, imprecise. Lifestyle changes are more gentle and allow the body more opportunity to adjust to a new balance.
    There is so much more to learn; and I suspect that the increased dependency on chemicals in our environment and foods is somehow near the cause in CFS.
    The inforgraphic will hopefully assist all of us in looking more broadly for a new place to research for specific answers.
    Again thanks for all this work!

  13. Thanks for all the comments, everyone!

    @Terri, the treatments were all contributed by patients, and the study was based on all patients who have reported CFS at CureTogether.

    Not all the treatments are labeled on the chart, so if you go to one of these links, you will see the complete list (including methylation treatments, antivirals, etc):

    http://curetogether.com/chronic%20fatigue%20syndrome/treatments/
    and
    http://curetogether.com/chronic%20fatigue%20syndrome/ig/treatment-effectiveness-vs-popularity

    Hope that helps! We’re not trying to bias the results in any way towards classifying CFS as psychosomatic vs. neurological.

    Wishing you all the best,
    Alex

  14. Wish I could find out how to reach Freddd to get in on his cure…

  15. Justin Reilly, esq. Says:

    As in every patient survey ever done on ME (‘CFS’) “Graded Exercise Therapy” comes in as the most harmful “therapy”. GET is pushed by charlatan UK psychiatrists headed by Wessely who propagandize that “CFS” is really just psychological. The cardinal feature of ME (“CFS”) is Post-Exertional Morbidity/malaise, meaning exercise and other stressors make the disease worse. PEM, to my knowledge, occurs only in mitochondrial diseases like ME and is one feature that clearly separates ME from Idiopathic CF and depression.

  16. Thanks to CureTogether for the site and to all the people who have taken the time to share their experiences.

    I have collated a lot of the patient surveys on the response to exercise at: http://sacfs.asn.au/news/2009/09/09_20_adverse_reactions_to_get.htm .
    It is quite common for people with ME/CFS to report being made worse by exercise and graded exercise therapy programs around the world. I think will link back to this site now.

  17. Well your methods seem unscientific in that your
    selection criteria are not publish but appear to be
    based on self-selection. People who feel tired
    for an extended period frequently say that they
    have Chronic Fatigue Syndrome so you mayi
    have those as well as depressed people who
    feel tired for that reason. Many conditions can
    cause a lack of energy and a resultant feeling
    of fatigue,
    So you are including people with all sorts
    of condition which may or may not include
    actually Chronic Fatigue with Refractory Post-Exertional
    Fatigue.

    If you have a thyroid problem thyroid supplements
    will help you a bit.
    If you are depressed and who has actual cfids would
    not be depressed at some point in the realization
    of the nature of the problem and the lack of scientific
    interest in the determination of the cause and any
    possible method of recovery. But if Depression
    is the problem then stimulants and anti-depressants
    will help.

    People with cfids frequently have Thyroid problems
    because the Thyroid T4 compound produced by
    the gland may not be locally converted by the
    cellular mechanism as in normal operation.
    So cfids and maybe some other patients may
    need T3 so that the cell can function more
    normally.

    Undenatured Whey Protein can help many because
    of the precursor chemicals it contains to strengthen
    the immune system and help other systems.

    NADH or CoEnzyme 1 will help other with cfids
    but is a supplement to be used with care as it
    can cause psychological disturbance. I had
    a skin reaction after 5 days at 10 mg but it
    seems to help and so I take it less than daily
    to get results that don’t feel as good but
    which seem to help me. This is a chemical
    which works at the intracellular level to
    assist in the energy cycle.

  18. I left my comment in the wrong place somehow. I have documented immune defects: 37 kDa Rnase-L, and a natural killer cell function of 2%. The following viruses are reactivated, some even in my spinal fluid: EBV, HHV-6 Variant A, HHV-7, Cytomegalivirus (CMV), and Coxackie B. My VO2 MAX score was 15, abnormal SPECT scan and Halter Monitor indicate brain and cardiac problems. I have been on the experimental (Phase III) immune modulator Ampligen 8 1/2 years out of the past 12. Before that, and when I relapse (which I did twice off Ampligen), I am a 30 on the Karnovsky scale – mostly bedridden, must use a wheelchair, can’t drive or read, have expressive aphasia, ataxia, memory loss, massive confusion, and blackouts. Severe pain behind eyes and back of neck 24/7, migraine-level headaches, large muscle pain, cannot bear light or loud noises. After a while on Ampligen I go as high as a Karnovsky 70, with my main problem stamina and an inability to shake off viruses. Each time back it has taken longer to get better. I also have 2 liters of IV saline a week for NMH/POTS, and take supplemental thyroid (both T3 and T4) for Hashimoto’s thyroiditis and hypothyroidism. And I take Klonopin at night for myoclonus, and a little Flexeril at night for the leg pain.

  19. When NOT on Ampligen: a lot of rest. Dark glasses outside and in places with bright lights. A wheelchair meant much greater independence. It helps with NMH to keep our legs up win sitting. Never walk when you can ride, never stand when you can sit. For everyone: never let your pulse go over 100 bpm because that can trigger PEM. A good diet – the diabetic diet is a good one – helps. Warmth helps with the myofascial pain. If you have problems with confusion and someone needs to talk to you, turn off the television or go in a room with no distractions. Have note paper and pencils around so you can make notes anywhere. And rest, rest, rest.

  20. I tried to scroll over all the dots (it is difficult) but did not see any that showed 5HTP. I take 500-600mg/daily, along with some other supplements and that has bee the things that has helped me the most. The other was changing from synthetic thyroid to natural (armor). I wonder if others have the same experience??

  21. @D Lewis, thanks for your feedback that it’s hard to see all the dots – an alternate view of the results are here – http://curetogether.com/chronic%20fatigue%20syndrome/treatments/

    5hTP is one of the treatments listed on the survey at http://curetogether.com/chronic%20fatigue%20syndrome/survey/treatments/, which you can take if you like to share your experience. 5hTP didn’t have enough data to make it on the graph.

  22. I have been through extensive testing over a lifetime and have discovered many of the things this graph indicates. This is amazing. Thanks for graphing this information and making it readily available.

  23. Thank CureTogether for doing this wonderful infographic. I love it! It is amazingly helpful. So many CFS patients try everything that someone suggests and yet there is very little data available that aggregates the effectiveness of these treatments.

    So much money is spent and wasted on trying anything that could potentially work. Even our doctors who suggest treatment X or Y lack sufficient aggregated data on what works or is likely to work. I have pills and potions and all manners of things in the cabinets. Things tried and did not work. And so much of it is so grossly expensive.

  24. [...] The Ashoka prize is a great honor that will bring added credibility and exposure to CureTogether, which will help us to spread the word to more people who can be helped by the data we’re gathering and the discoveries we’re making. Two recent examples of the kinds of discoveries we are making as more people join are the recent discovery of a migraine biomarker that predicts a negative reaction to the drug Imitrex (http://curetogether.com/blog/2011/01/11/migraine-symptom-predicts-response-to-imitrex/), and a chart of popular vs. effective treatments for Chronic Fatigue Syndrome (http://curetogether.com/blog/2011/02/03/surprising-new-data-what-really-helps-patients-with-chronic-…). [...]

  25. There is one set of supplements that can reverse the healing effects of methylb12, adnosylb12 and Metafolin, sometimes starting within hours and bring back symptoms rapidly, and that is glutathione and glutathione precursors, which include l-glutamine, NAC, undenatured whey and some other forms like Maxgxl that out it all together. Low doses do appear to cause some temporary improvement for some people. Those who take mb12/adb12/Metafolin also naturally generate more glutathione correcting that imbalance without the specific supplement. This does not cause the problem that the glutathione producing supplements can cause. First, those taking the active b12s/folate have often cleared all sorts of symptoms so when these come back rapidly they know something is up. When a person’s symptoms get worse or new symptoms even with glutathione (precursors) it is popularly called “glutathione detox reaction” or “NAC detox reaction”. Just because people want to call it “detox” doesn’t make it so. It is actually something entirely different. when there is “too much” glutathione, however much that actually is, glutathione combines with mb12 and adb12 converting them to a nonactive form of cobalamin, glutathionylcobalamin, which is rapidly flushed out of the body by the kidneys. People taking larger doses of b12s might see their urine turn much more red as the b12 is excreted. This can entirely prevent active b12s from being present in the cells. When there is no b12 for the methylfolate to interact with in the cells the methylfolate is flushed from the cells creating a methylfolate deficiency in the cells but not in serum. This is called a “methyl trap” in the literature going back to the 70s. The “methyl-trap” is characterized by slow or abrupt onset of hard folate deficiency followed by slower onset of mb12 deficiency symptoms followed by even slower onset of adb12 deficiency symptoms. After this so-called “detox” reaction occurs a person’s Metafolin/adb12/mb12 requirements may go up 10 fold in order to get rid of symptoms and may remain high for more than 2 years in some people. The deficiency induced in me caused neurological damage in the nerves leading to my feet that were already damaged but had made progress before the worst setback I have experienced. The “methyl-trap” can be caused by the “methylation block” which also occurs with glutathione.

  26. I’m really surprised I don’t see magnesium and malic acid. The two combined together is sold as magnesium malate. Out of the many supplements I’ve taken over the years it’s worked the best. People who have chronic fatigue and fibromyalgia have muscles that are hypoxic. The Malic Acid and Magnesium helps the body complete the krebs cycle therefor giving cells the energy they need. It gave me my life back and I can’t do without it now. Do a search online and on forums. Many people swear by it and so do I.

    http://chronicfatigue.about.com/od/exercisenutrition/p/magnesiummalate.htm

  27. I just found it on the interactive board so scratch that last post.

  28. I would like to add another problem many of us have that has forced it’s way into my consciousness over the past couple of months, paradoxical folate deficiency. It’s paradoxical because it is caused by folic acid and/or folinic acid. Even a small amount of folic/folinic acid can block 10x or more Metafolin. Not surprisingly this induced folate deficiency is usually called “detox” http://forums.phoenixrising.me/showthread.php?10507-Folic-acid-and-folinic-acid-can-block-metafolin-inducing-deficiency-called-quot-ddtox-quot/page5

  29. I suffered for years with fatigue and tried so many things. What finally got me back on track was a homeopathic prescription actually given to me by a medical doctor. It was Meteoric Iron Prunus that I acquired from http://www.urielpharmacy.com. I took 10 pellets 4x a day. In addition I took 325 mg of Magnesium about twice a day. The brand I took was “Calm”. It took a couple months to finally get back to normal but I could tell a difference almost immediately. Now when I start feeling exhausted I just take them both for a day or two and that seems to keep the fatigue away.

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