Realistically, How Can We Find a Cure?

[AngelM]

But three years ago, I began to hear about new ME/CFS research being conducted at Stanford University and the University of San Diego and other respected universities and, for the first time, my hopes soared. DNA had evolved a thousand times since my diagnosis, and surely the answer would be found there. So I began to follow the research, and study White Papers and Medical Journals I didn’t understand. I even enrolled inna class in Statistical Research so I could learn how to separate good research from bad. I joined CFS forums, participated in a support group, and wrote articles about CFS for publication. But though I have learned a great deal about ME/CFS over the past few years, I also have begun to believe that this disorder has taken on a life of its own. With all the new symptoms and subsets of diseases being added to the CFS mix, I no longer recognize it as the disease I was diagnosed with 18 years ago.


With so many protocols, miracle cures, and opinions currently floating around on social media, it seems like CFS has become an uncontrolled, multi-headed monster with regenerating tentacles that reach out in bizarre directions. And with researchers seemingly regressing to the study of Lyme Disease, mold, and even mass conversion disorder as a cause for CFS, I can’t help but wonder if we are going backward, not forward. Will this illness soon revert to being called “Yuppie Flu,” rather than Chronic Fatigue Syndrome?


Treatments have increased both in number and complexity over the past fifteen years. Which, for me, is very confusing. Just as an example, the issue of diet as a possible treatment for CFS has gotten totally out of control. Diet is an important component in the management for any illness, but diet recommendations for CFS are all over the place. This quote caught my attention:


“One of the most common deficiency is choline because a high fat diet eg cheese (pizza is the worst over 200g of cheese on one pizza), milk, yoghurt, icecream, then fried foods in cooking oil...”


So is a low fat or vegan diet the answer for CFS patients? And does yogurt, the mainstay for those of us with IBS (a common symptom presented by CFS sufferers over the past thirty years) actually contribute to our disease by depleting choline? And how does any of that information correlate with the fact that Keto, a diet of high fat and no carbs, is considered by some to be the new miracle cure for CFS. In regard to choline: Is a choline deficiency common to all CFS victims? If it is, choline is definitely worthy of further evaluation as a diagnostic marker. But if it is not a condition common to 98 percent of patients presenting with CFS symptoms, then a diet that increases choline, though efficacious for some, only complicates things for the rest of us.


Methylation, a protocol currently recommended for CFS, became popular as a result of the once-promising MTHR studies. The MTHR test is expensive and far from routine. But I insisted on having it done, and I’m sure many others with CFS did the same, only to find that methylation, which at last count involved taking 15 different supplements on a daily basis, works the same for anyone who breathes air on this toxic planet. And though methylation is perhaps a good idea, it shouldn’t be confused as a miracle treatment for CFS.


Which brings me to supplements. Realistically, how many supplements can a person take in one day? My medicine cabinet is bulging with them to the point that I can’t remember which is for what. But, like everyone else, I hear about a new supplement that might help my CFS symptoms and I rush to buy it. Overall, it seems that the only one truly benefitting from the alphabet soup of expensive supplements in my medicine cabinet is the drug company.


So, once again I find myself frustrated with the direction this disease is taking me. I also find myself again doubting that there will ever be a cure, which leads me back to putting my head in the sand in order to avoid more disappointment.


My question is how can a cure possibly be found for a disorder that has no commonality of treatment or symptoms among its victims? It would be like finding a one-size-fits-all solution for RA, cancer, diabetes, and Parkinson’s disease. For a disease to be considered real, snd have the possibility of a real cure, doesn’t it first have to be narrowed to its lowest common denominator—a definition that applies to 98.9 percent of the affected population. Don’t patients need to present as more alike, than different? Because currently that doesn’t seem to be the case with CFS—-Which may mean that the criteria for CFS diagnosis needs to be revisited by researchers. And for purposes of research, those who don’t fit a more narrowly-defined criteria (whatever that might be), as well as, patients who present with subsets of symptoms that fit into other disease categories, need be separated out of the pool of CFS research participants. I am not a scientist or a medical doctor, so I may be totally off base here, (wouldn’t be the first time) but as long as CFS continues to grow more complex, comorbid, and inclusive in its definition, how can researchers ever hope target a cause and/or find a cure?

 

[taniaaust1]

. I am not a scientist or a medical doctor, so I may be totally off base here, (wouldn’t be the first time) but as long as CFS continues to grow more complex, comorbid, and inclusive in its definition, how can researchers ever hope target acause and/or find a cure?

It hasnt really grown more complex, the thing known as "CFS" has always been very complex but it sounds like you only with time became aware of this situation. CFS is a wastebasket diagnoses where more then one illness is probably involved. This is why things like the international ME diagnostic criteria was developed.

Which brings me to supplements. Realistically, how many supplements can a person take in one day? My medicine cabinet is bulging with them to the point that I can’t remember which is for what. But, like everyone else, I hear about a new supplement that might help my CFS symptoms and I rush to buy it.

That's something you should not be doing... not all "CFS" is the same illness so do not follow general CFS recommendations. You could even make yourself worst doing that.

You need to select things to try which are more likely to benefit you eg go by your test results.. correct any deficiencies. Focus on what ever subgroup you are in and focus on the recommendations for that subgroup eg if someone has mold induced ME/CFS well that subgroup of recommendations is the one to be focused on or if someone has ME.. focus on ME recommendations.

Treating supplements generally is like finding a needle in the haystack and I probably trialed 30-50 different things before I started striking gold and finding things which helped me and that was by instead by focusing on things my test results or my actual illness more so recommended.

So is a low fat or vegan diet the answer for CFS patients?

Diet can be extremely important as far as CFS goes as so often diet issues are involved, the thing is one need to work out what any diet issues you have are.. there is no one size fits all as CFS is not the same illness in all and we all have different diet issues. Im a great example of how varied diet issue causing troublems may be
eg for myself..

1/ it turned out I had hyperinsulinemia and I majorly react to the massive insulin spikes I get due to it (maybe my reaction are so severe due to my MCS?). So due to this I need a diet which is lower in carbs then a normal diabetic diet. (This got worked out by a specialist and testing). My whole immune system seems to drop (I get viral symptoms) among other symptoms when I break my low carb diet.

2/ It turned out I had food intollerences, it took me a couple of years as I didnt have testing for these to work out what these were (It is possible i still have some which I dont know about yet). I have issues with this with dairy (I think the casein), cashews, peanuts, coffee, some food colourings, mustard

3/ turned out I have a genotype which can react negatively to sulphurs? I think it was.. so this made me think more about the times I got sick after eating those foods. Turned out I get issues if I have too much brocolli, eggs

4/ I also have a severe food allergy (that is easier to find out but as I ate pizza when I got it, I still dont know the specific thing I reacted to that day which made my lips/mouth swell up.

5/ Dietary wise.. I also had a lot of deficiencies... iron (though I ate lots of meat)

6/ I also found out by testing I had the worst form of MTHFR mutation, a double copy. My daughter was born disabled (similar to spina bifida due to that mutation but we didnt know the cause of her birth defects until the MTHFR was discovered. In my case I also need supplements for that as I cant get what I need from food as my body doesnt convert folate properly.

Anyway. my main message to you is that you need to try to stop lumping yourself with CFS.. and work to actually figure out the things which are going wrong in you be it diet or otherwise.. all the best.

***Note.. methylation treatments become well known as they did help some (back then there wasnt much in the way of methylation studies as such). There was two different main types of methylation protocals but now days due to testing one can more easily find out more what to trial there.

As (my own person study) I found that B supplementation (the B though can be different and the form can also matter) helps around 75% (I came to that conclusion after analysing the results of approx 30 ME/CFS people and what they said helped them, B supplementation came out on top of all the supplements). So for most due to this I'd think that vegan diets would actually be harmful as one would be likely to make any B deficiencies worst (note human bodies also use more B when stressed).
......

The only way to deal with the whole CFS mess is to advocate for subgroups or splits of different illnesses from this.

 

[Runner5]

I wish there were less sake-oil-salesmen. People selling cures or pushing quackery.

I think the diet route because in the United States where I live the number one problem we face is metabolic illnesses. Throw a rock you'll hit someone with a metabolic disease. (This isn't necessarily because we're terrible eaters (probably *raises hand*) but we also have a huge amount of pollution and poisons we're being exposed to and some really funky food additives.) So Akoms razor, "the simplest solution tends to be the right one."

So if it's metabolic illness -- how could we treat it? What would be a way we could discern if it's a possibility?

That's why I started looking into how to treat diabetes with diet. And a lot of the successful diets that go head to head here on the forum and elsewhere tend to cut grain, or cut the same foods -- so even while people argue I think having a convo about, "why does this work?" might be in order. Like I went Vegan but it only started to work when I cut grain something my Keto and low-carb friends might give a nod to (if they're not busy putting down Vegans **seriously!!! C'mon guys, I hate feeling put down every time I come here. It hurts my feelings.** ).

I used to digest grain though, I mean, I always had a bad GI but holy goats -- it has been so bad the last few years it has almost put me in the hospital a couple of times.

[QUOTE="taniaaust1, post: 990663, member: 859]

As (my own person study) I found that B supplementation (the B though can be different and the form can also matter) helps around 75% (I came to that conclusion after analysing the results of approx 30 ME/CFS people and what they said helped them, B supplementation came out on top of all the supplements). So for most due to this I'd think that vegan diets would actually be harmful as one would be likely to make any B deficiencies worst (note human bodies also use more B when stressed).
[/QUOTE]

https://www.onegreenplanet.org/natural-health/b-vitamins-how-to-get-them-in-a-vegan-diet/

Speaking for Vegans here -- we get plenty of B-vitamins. We are aware of cortisol and stress on B vitamins ( and caffeine and sugar impact on B vitamins). I think primarily Vegans are almost all food nerds/nutrition buffs. I have read all the other sides books too, I do like me some Gary Taubes. ;-P

I also had a daughter born with a birth defect, I'm sorry to hear about yours, I hope she is okay.

The one thing the food industry and the world is doing really well is playing a trick on us all right now - that the truth is unknowable. That everything is open to interpretation. They have one product over all the others -- doubt. As long as we play along on the 'who is right' train -- we are part of the problem. We are being manipulated and confounded. I have no time to argue with my fellow man, but plenty of time to listen to what has worked for them.

I guess that is what keeps me coming back here. I want to hear what other people are thinking and what they're doing - and I'm gold-panning for little nuggets that I hope someday come together into something and also here people get what I go through trying to function.

I think maybe sometimes -- maybe PR should be more of a socializing forum -- how was your day? Did you get a shower in today? For unconditional support and friendship, because there are lots of forums talking about this fantastical cure-all pushed by someone less than uh' trustworthy or some absolute B.S. -- but I think the loneliness of the illness and the isolation might also be 50% of the problem with CFS / ME -- could be wrong though.

 

[ahmo]

I use 3 types of choline daily. (Alpha GPC, citicoline, sunflower lecithin). And correcting methylation + detox ridded me of the most noxious of my symptoms. I eat a high fat die, with small amounts of meat. I have a very limited diet, avoiding histamines, sulfur, green veg. But I've been relatively stable and comfortable since my 5 year period of diet changes, methylation, detox. good luck.

 

[AngelM]

You make some excellent points. Being overwhelmed with options is almost the same as having no options at all. My CFS protocol has been to throw everything at it and see if anything sticks. The problem with that approach is that when there is improvement, you have no idea what method (or combination of methods) made the difference.

 

[Wishful]

Finding a cure, or even a treatment that works for most of us is possible. I expect it will require the researchers to find the common element, which might be a specific feedback loop in our cells. That feedback loop might be affected by a range of different factors: genetic, epigenetic, chemical, microbiome, whatever. Hopefully they'll then find a way to adjust the feedback loop. That may be tricky, since it probably involves delivering specific molecules across the BBB into the cells, but it is possible.

Some of us can reduce our symptoms by changing some of those factors that might be involved. Those factors vary with the individual, which is why there isn't a 'one treatment fits all'. Without an understanding of the common element of ME/CFS, we don't have any guide for what might work for us. That's why many of us try all sorts of things in the hopes of finding something that works for us. I can't even estimate how many things I've tried over 17 years. A few have worked well briefly...then never worked again, which seems common for ME/CFS. I have found two things that work well and reliably for me (T2 and cumin), but which no one else has reported being reliably effective for them. Both were found by accident, by observing an improvement and figuring out what triggered it.

There are plenty of treatments mentioned on PR that I haven't bothered to try. They're based on theories that I don't support, so I don't see them as being worth the expense and effort. I try things that make sense to me as theories. I also try things that require little expense or effort (local plants for example).

Your post sounds like you're upset that there isn't a clear 'these treatments work for ME/CFS' list. There isn't because there are too many factors that affect the core malfunction to some extent, and these vary from person to person. I've suggested a sticky list of treatments we've tried and whether they work reliably, work briefly, or don't work at all. I think we'd end up with a long list of things that work for a few people. If you could factor out the people who mistakenly believe that it is actually helping, it would be even fewer. I'm not expecting collective experimentation to result in a 'one treatment for most people'. I'm expecting researchers to find the common element first, and then identify some factors that affect that common element. Then we might have something to base our experiments on, and we might find some useful herbal remedies or whatever that work for more of us. I expect an effective treatment will come first from the researchers.

Researchers have discovered common factors among ME/CFS patients in the past few years, so I'm somewhat optimistic that they'll find the core malfunction in the next few years. Even if they just clearly identify some common factors that can be tested for, that will give us some direction for treatments that could at least reduce our symptoms.

 

[AngelM]

Thank you for your post. It does relieve some of my frustration about this bizarre illness with its seemingly unconnected symptoms. I think patience is my best ally. So I need to be patient enough to practice patience. I appreciate your taking the time to share your thoughts and valuable information with me.

 

[Wishful]

Yesterday I remembered that as a toddler I had a couple of old (dead) radios. I knew nothing about how radios worked, or about electricity, but I was totally convinced that if I plugged the tubes in the right sockets and connected the power cords together and turned the knobs just the right way, music would come out. It then occurred to me that many of us are doing the same thing with ME/CFS treatments. We have very limited understanding of how the body works, but we convince ourselves that if we take just the right cocktail of supplements and follow just the right protocols, we'll achieve a cure. We gain a very shallow understanding about some aspect of biology, such as research findings about pyruvate dehydrogenase deficiency or leaky gut syndrome or whatever, and become convinced that 'This is the answer!!!'. The properly educated researchers, realizing that even their understanding of ME/CFS is limited and it's too early to claim anything more, honestly say 'This could be part of the answer, but we need more research.'

I'm not saying that we should stop experimenting, since it certainly is possible to find treatments that provide some benefits. However, some people get depressed at the constant stream of 'this is the answer' that proves to not be the answer. I'm not sure what the proper balance is: too little optimism is as bad as too much.

I never did get music to come out of those radios...

 

[AngelM]

That is beautifully expressed. And so true. Thank you.

 

[Cfs2019]

I do think it’s an overactive hypothalamus gland

But I also believe there’s nothing out there that can help that

 

[taniaaust1]

Speaking for Vegans here -- we get plenty of B-vitamins. We are aware of cortisol and stress on B vitamins ( and caffeine and sugar impact on B vitamins). I think primarily Vegans are almost all food nerds/nutrition buffs. I have read all the other sides books too, I do like me some Gary Taubes.

You may of researched vegan diets and how to get B vitamins.. but that is something most do not know if they are not having meats. Many people who are trying diet after diet for their ME out of desperation do not do a lot of research into each one due to their exhaustion.. many have trouble reading. They may think .. oh I'll try vegan and just suddenly cut all animal stuff but try to still just have only the rest of their normal diet.

I know of many with ME who have tried certain diets but not gone about them in the right manner.

 

[Runner5]

You may of researched vegan diets and how to get B vitamins.. but that is something most do not know if they are not having meats. Many people who are trying diet after diet for their ME out of desperation do not do a lot of research into each one due to their exhaustion.. many have trouble reading. They may think .. oh I'll try vegan and just suddenly cut all animal stuff but try to still just have only the rest of their normal diet.

I know of many with ME who have tried certain diets but not gone about them in the right manner.

Um' if you say so. I've never seen that. Seems like you're a self-professed expert so I'll leave you to it.

 

[taniaaust1]

Um' if you say so. I've never seen that. Seems like you're a self-professed expert so I'll leave you to it.

I actually was in the middle of a 4 year government accrediated course when I developed ME. Nutrition and dietetics were two of my subjects which I have two years training with (not much good to me now as my memory is so terrible). I know that does not make me an expert but I did want to say that at your comment which did come across as kind of rude.

Ive had ME now for NINETEEN YEARS and in this time have known many hundreds of ME people, Ive been very active in many ME forums over the years so are not just speaking out of my butt when I comment about some people with ME doing diets which arent right...eg not getting the nutrients they need due to being too exhausted to research them well.

Ive been involved in ME forums since the internet first was becoming a public thing, Ive been part of ME support groups in real life, been involved in some dietary ME research as study participant at one of the universities (the study has been offically published, Ive been involved in 5 different studies with different ME researchers all up at this point but only the one dietary one). I have 4 different dietary problems myself so are on a very special diet, Ive had to do a crazy amount of self research to get my diet right etc etc and Im fairly sure I still dont have it quite right.

Its okay if you disagree and maybe you have more ME and dietary experience then I do and know more but you didnt need to do it in such a rude way putting me down.. how about when you havent seen something for yourself just saying that rather then taking a sling at the person who said something.

 

[Runner5]

Animals get B vitamins from the foods (PLANTS) they eat. When we eat plants and fortified foods we get plenty of B Vitamins - we cut out the middle man (moo). In the case of B12 it is in the soil and absolutely everyone is told when starting Veganism or even vegetarianism they need to take B12 - although we have onboard stores of B12 that will last anywhere from 1-3 years.

You also made the assumption I am not as well educated as you are or that I have no nutritional background.

Vegetarian and Vegan diets are some of the most highly studied in the world. I do not say they are for everyone. I won't say anyone else has to follow this way of eating. I will not pedal any miracle cures dietarily (although, yeah mine has really super helped and I'm back to running and exercising and my activity window has really gotten larger)... But telling me, other Vegans and people interested in this diet that they will be short on B vitamins is simply as incorrect as you can get and irresponsible. It's like the overweight diabetic guy at the hospital who said to me, "Hmm, fruits and vegetables -- doesn't sound healthy."

You have a far greater chance of being deficient on just about any other diet but Vegan / Vegetarian.

Additionally, if you would like for me to post my day of eating from https://cronometer.com/ for B-Vitamins, will do. I get all my protein, vitamins, and gobs of fiber.

The one trouble I've had on Vegan and Vegetarian is probably gas and bloating. If you want to come at me with a real issue to DISCUSS and talk about, I will be happy to do so, I have always been 100% non-sugar coating about the diet I'm on, I will absolutely shoot straight.

On a Vegan / Vegetarian diet, take D3, take B12, take EPA / DHA -- and if you're worried take a B supplement.

But don't be scared of plants. They have tremendous healing abilities. I want everyone to know that. I want everyone to know they have helped me, they have helped my family and "big broccoli" isn't out to make money off this diet - there is little profit in vegetarians - but the meat and dairy industry put together most of the propaganda against it - think about it - it makes sense they have piles of money.

This is all I have to say, if you want to discuss, we can on a different thread sometime.

 

[Wishful]

Basing human diets on animal diets isn't a good idea. Some creatures make some of their own vitamins, or have bacteria who provide it for them. I expect that a list of essential vitamins would be different for each species, sometimes drastically different.

 

[alex3619]

On finding a cure, there are three paths. The first is serendipity. That is, we find it by chance. The possibility of using Rituximab falls into this category. The second path is hypothesis and test. Someone has an idea, they test the drug, then we find out. There are several drugs on that path right now, and at least one non-drug therapy under consideration but with details not being public. The third path is to figure out what is actually causing the problem, develop tests, and then based on that understanding to develop treatments targeting specific problems. Those treatments could be existing drugs, new drugs, or non-drug therapies.

I did much worse as a vegetarian. That was my story, it might not be yours. We need meat for energy, we do not typically do well on carbs, but we still need carbs for a healthy gut. We also need more fat than most, we rely on fat for energy more than most people. These are of course central tendencies according to current research, individuals do vary. Its not like we are all clones of each other.

The dietary story is likely to change a lot in the next few years as we start understanding more about how ME metabolism is different to most people. Yet there will be no substitute for individual testing.

 

[AngelM]

Talking diets is as dangerous as talking politics. I usually don’t go there. But regarding veganism, I know from personal experience that you have to be very committed, enjoy cooking, and have a family who are supportive. Otherwise, you’ll end up taking short cuts, eating nothing but beans and rice, and short yourself on protein or B-12 or some other necessary nutrient. I can preach this with some authority because my daughter, who is in remission from Myasthenia Graves, swears by veganism, and has become evangelical when it comes to eating anything with eyes— other than potatoes.

But my vegan daughter has dedicated a huge chunk of her life to studying vegan recipes, cooking balanced no-meat, no dairy meals—and she also has a husband who never complains or strays from the meal plan. Me? I’ve tried vegsnism, Keto, and pretty much every other diet that has come down the pike. Remember carbo-loading? I just don’t have what it takes. But as long as my daughter continues to be healthy and happy, she could eat dirt and I would support her 100 percent.

Onviously. strict or fad diets. take a level of commitment, time, and energy, I don’t have. But I refuse to feel guilty about it.

 

[alex3619]

Onviously. strict or fad diets. take a level of commitment, time, and energy, I don’t have.

I am nine months into a higher protein diet and its helping with my blood sugar. Its not high protein or keto, but its still a problem in cooking with limited energy ... you can eat many vege with minimal preparation, but I do not recommend eating raw meat. So I cut corners, which means I am not eating what I should. I even cut corners with vegetables, and am eating a lot of hummus because I can get it premade. I do use frozen vegetables too, which are precut, but that still requires cooking. I used to cook three healthy meals a day, from fresh ingerdients (as both a mild and even a moderate patient), now its down to one a week if I am starting from fresh (as a patient at the severe end of moderate). Its an issue.

 

[Moof]

I am nine months into a higher protein diet and its helping with my blood sugar. Its not high protein or keto, but its still a problem in cooking with limited energy ... I used to cook three healthy meals a day, from fresh ingerdients (as both a mild and even a moderate patient), now its down to one a week if I am starting from fresh (as a patient at the severe end of moderate). Its an issue.

Me too. I get around it partly by making 20 portions when I do cook, and freezing 19 of them! But high protein, low carb is the best diet I've found for ME. After 43 years and lots of hard work on it, I've pretty much tried all the options.

 

[Judee]

The slow cooker is one of my best friends. 3-5 packages of antibiotic-free chicken thighs in an 8qt at night before bed. My mom packages in 2-3 serving sizes in the morning and then labels them for the freezer.

Done with other meats once every 7-10 days and we can get a stockpile going for those extended crash times.

We still do rice and gluten-free noodles and follow a similar protocol using the microwave instead.

(No working oven right now or I probably would try for 20 portions if I could...Wow!! You make me dream. )