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PhoenixRising is ridiculous (rant) (self.cfs)

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I don't mean to be offensive. I respect their beliefs and their spirit. But the bad advice on the PhoenixRising boards is ridiculous. I was just reading a thread about a woman who had trouble crashing post-exertion, and people were suggesting she "try cinnamon". Seriously?

I'm tired of anecdotal solutions to this complex problem. Stuff like detoxes and herbal supplements etc have never been proven to do anything for anyone in repeated clinical trials, yet some random internet dude who feels pimento oil alleviates his symptoms is handing out hope like it's candy. And people are supporting him!

I don't mean to be demeaning here. I deeply admire the emotional support and love that PhoenixRising offers people who are suffering, many of them alone and without friends who understand them. But that board is wacky in regard to actual medicine.

CFS is the worst thing ever to happen to me in my entire life. I'm in the prime of my life, but have had to quit my job and cancel endless hangouts with friends and dates with girls because of this syndrome. I sit on the couch all day, every day, all month long. And every year I'm getting sicker and sicker and sicker.

The last thing I need is to take some f$#king cinnamon.

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[–]Laur-Ent 12ポイント13ポイント  (8子コメント)

My favourites (or least favourites) so far are:

"I REALLY think you should try going gluten free. I was reading about it online and people who have gluten intolerance get tired too!!!!"

"You should try going to the gym every day and just push through the initial exhaustion, you'll feel better in no time!"

"I know EXACTLY what you need!! My daughter had similar problems and she took some hormone balancing herbs and now she's fine!"

"You just need to overcome the mental barrier you've set up for yourself. I get tired sometimes too but you just have to keep going and get things done, then you'll sleep well at night and won't have insomnia anymore."

Ugh ugh UUUGH shut up! I appreciate it when people try to help me however I hate it when they just assume things. Like my doctor hasn't already had me try going gluten free. Like I've never tried to focus on building my fitness. Like I've never had my hormones tested. Like I've never pushed myself too far before in the hopes I'll just 'overcome' this.

It's like everyone just assumes we're oblivious to anything and everything that could possibly help and exhausted all our options. Sometimes I seriously think people just think I WANT to be sick.

[–]analoguefade 2ポイント3ポイント  (3子コメント)

I assume you're not talking about things people have said to you on PR. Anyone suggesting exercise or avoiding mental barriers on that board would be crucified.

[–]Laur-Ent 3ポイント4ポイント  (2子コメント)

I've only heard these things from friends/family, and the occasional distant relative or acquaintance who asks about my cane or why I'm not in college. Those people I don't know well I can forgive, but when the people closest to me say that stuff (it's usually my mum or dad suggesting exercise and overcoming mental barriers) that's what gets to me. Just because they should know better by now.. God knows I've told them enough! I've even had to link them to articles online about these subjects because they're more likely to listen to science/research than they are to believe me. Which I get, but it's still frustrating.

[–]analoguefade 0ポイント1ポイント  (1子コメント)

I understand. Have they read any of the IOM report materials?

[–]Laur-Ent 0ポイント1ポイント  (0子コメント)

I sent it to my dad as he was the most problematic. I don't think he ever read it though :/ I'm not letting him boss me around until he has read it though.

[–]ZellieMoogle 0ポイント1ポイント  (0子コメント)

"You just need to overcome the mental barrier you've set up for yourself. I get tired sometimes too but you just have to keep going and get things done, then you'll sleep well at night and won't have insomnia anymore."

"You should try going to the gym every day and just push through the initial exhaustion, you'll feel better in no time!"

I spent 8 years trying to just "keep going" because I didn't know what was wrong with me, pushing through work and studies, and now I've probably severely damaged my chances of ever getting better.

[–]Automobilie 0ポイント1ポイント  (0子コメント)

Crashes are horrible to deal with, but this kind of stuff is what makes me feel like "I'm going to have to kill myself eventually..."

[–]WELLinTHIShouse 0ポイント1ポイント  (1子コメント)

In defense of the "go gluten free" thing, it's not really the gluten that helps some people feel better when they cut it out. By cutting out wheat flour, you severely reduce the amount of folic acid in your diet, which can resolve some of the problems having an MTHFR mutation causes symptomatically.

That being said, "helpful" anecdotal advice is intensely frustrating. I'm not gluten free, and my folic acid avoidance is imperfect. I've fallen off my methylation supplement regimen even though it DID provide symptom relief after the initial horrible period of kickstarting internal processes that hadn't been working in ages. But depression sucks too, and it makes it hard to remember to take care of myself...and I'm just feeling too awful right now to start that protocol all over again.

I realize I went off on a tangent here. Sorry. I'm just waking up.

[–]Laur-Ent 1ポイント2ポイント  (0子コメント)

Yeah, I agree. I do know that about gluten, and I did feel a little better for the first couple of days I was on the diet but we concluded that was just because I was focusing hardcore on eating healthy stuff, and I'd cut out all the processed junk. My diet up until that point hadn't been fantastic as I lived at home and mum didn't cook great food. I was also too sick to cook for myself so I just had to eat whatever everyone else was eating, which wasn't the best.

Since then I've definitely focused more on a good diet. I have my own place now, and have a bit more time/energy to cook. Learning easy fast healthy meals was amazingly helpful. I'm not super hardcore about it because it's just not realistic and I'll end up falling off the wagon. I work well on a nice balanced diet though, and I don't eat much gluten anyway. I also cut back on sugar/saturated fat/dairy/super heavy foods, and I eat smaller portions. Having a big meal just exhausts me and causes lots of abdominal pain!

So yeah I wasn't too upset about someone suggesting I try the diet, it would be a good idea for some, however it was more about the way they suggested it. They didn't ask if I'd tried it already and just went straight to "you need to try this, it'll totally cure you", like this diet would be end of all my illnesses. Which was frustrating because this person knew how sick I was and she knew that my health was kind of a touchy subject.

I understand it, I just don't like it :p

[–]bananabas 13ポイント14ポイント  (2子コメント)

A lot of people people are naive, desperate and do not have science backgrounds - what do you expect?

On a secondary note, you seem quite pissed, have some cinnamon, I heard it helps with the anxiety :p

[–][deleted] 4ポイント5ポイント  (1子コメント)

My roommate's cousin's nephew heard that anxiety is better cured through a two week diet of pure Columbian black-tar heroin. I'll be starting the regimen this week. Will report back here with results!!!1

[–]TomasTTEngin 1ポイント2ポイント  (0子コメント)

Colombian heroin? I fear you've been sold a dud. That's like Samoan cheese or French silicon chips.

[–]etherspin 5ポイント6ポイント  (2子コメント)

But on the flipside so much of the information is in very dry form with lots of jargon and has doctors in the thread arguing over the heads of everyone else . I find the bigger threads are of more factual complexity than my addled brain can handle.

[–]TomasTTEngin 1ポイント2ポイント  (1子コメント)

This.

Phoenix Rising is about the only thing on the internet that makes me feel dumb.

[–]etherspin 2ポイント3ポイント  (0子コメント)

hey but its a nice change from reddit which can make us lose faith in humanity ? :)

I look forward to an Aussie rituximab snorting party

[–]cfsslow 3ポイント4ポイント  (1子コメント)

In my quite extensive experience of CFS + Internet it's not a good idea generally to spend much time on the forums, it only focuses the mind on being ill. Of course that makes no difference to the symptoms, but it helps keep the mind off it a bit. I check every now and then for new research or very occasionally during particularly awful patches go for emotional support.

Also no one is forcing you to read it!

[–][deleted] 2ポイント3ポイント  (0子コメント)

Very true. However, I do need the emotional support that online communities offer. It's just frustrating that the junk is so immeshed with the good stuff.

[–]Kromulent 3ポイント4ポイント  (2子コメント)

PR has at least one consistently excellent forum:

http://forums.phoenixrising.me/index.php?forums/latest-me-cfs-research.15/&order=post_date

[–][deleted] 1ポイント2ポイント  (1子コメント)

Great point. A hovel of objectivity.

[–]Kromulent 7ポイント8ポイント  (0子コメント)

"An island of objectivity in a sea of cinnamon".

[–]willbir 2ポイント3ポイント  (0子コメント)

Not everyone there is so pro-supplements, e.g.

Supplements do not have any real effect on symptoms

How do I stop spending so much on supplements?

[–]OGrover 2ポイント3ポイント  (1子コメント)

The simplistic suggestions are frustrating to me, too. The only thing that keeps me from losing it, is realizing that it's the same with many other serious complex illnesses. Diabetes, MS, autistism, cancer, etc. are subject to hearing lame fixes, too. I think that loss of control is such a difficult emotion for many to handle that they need to grab on to any thing. I think it's a small leap from these simplistic solutions to superstition. Remember the scene in "Gone With the Wind" when the little girl says to put a knife under the laboring woman's bed in order to "cut the pain in two." I'm being sarcastic here, but maybe we should put a box of batteries under our bed to get us an energy jolt.

[–][deleted] 0ポイント1ポイント  (0子コメント)

Great point. This thread could belong in a diabetes subreddit. That said, it really is no excuse. The "idiot beliefs" are louder in every sphere, but that doesn't mean they should be.

[–]analoguefade 3ポイント4ポイント  (1子コメント)

Honestly this has not been my experience with it at all. Perhaps if you were looking at old threads or something, but increasingly PR is becoming heavily science and research oriented. These days people will often point out when there is no solid evidence for a treatment or when something is just woo.

I'm sorry you feel this way and I'd encourage you to stick around and participate. If someone says something bunk, call them out on it instead of coming to reddit to complain about it.

Anecdotal solutions are born out of desperation. You have to realize that people in some countries have zero support from medical professionals. They're forced to approach treatment 100% on their own with over the counter foods and supplements. Things like what you saw are a reflection of that.

[–][deleted] 1ポイント2ポイント  (0子コメント)

Anecdotal solutions are born out of desperation. You have to realize that people in some countries have zero support from medical professionals. They're forced to approach treatment 100% on their own with over the counter foods and supplements. Things like what you saw are a reflection of that.

Well said. Humbling and true.

[–]brutaldeluxe09 2ポイント3ポイント  (1子コメント)

I think people are just trying to be helpful so when you see a comment like "try Cinnamon" I'm not sure the person posting actually believes that a lack of Cinnamon is the root cause of the problem but it's maybe a small way in which they feel they can help, as after all there is not much help coming to us from elsewhere.

[–]ZellieMoogle 0ポイント1ポイント  (0子コメント)

I do appreciate that a lot of people are trying to help, but there's only so many times you can hear things like "Just get more sleep" or "Just exercise more" before you start wanting to use what little energy you have left to go on a rampage!

Some people are very obsessed with all these different diets and such that are popping up though, which may be fine for people that have help, but me making all my food from scratch and only eating stuff that isn't already packaged and ready to eat would land me even more ill health, instead of the desired improvement at the moment.

[–]Lamzn6 3ポイント4ポイント  (18子コメント)

Firstly, I completely agree.

My biggest frustration with these recommendations like "try cinnamon" is that people don't try to link it back to respectable, peer reviewed research. There's no point to any of these discussions if we're not relying on science aka actual medicine.

Cinnamon is a powerful antioxidant. Much better ones are zinc, Co q 10 and NADH as supported through research.

[–][deleted] 2ポイント3ポイント  (0子コメント)

Thank you. I'm a deeply spiritual person. I uphold validity in the subjective experiences in all of humanity's shapes and sizes. But we need hard science in regard to the medical treatment of CFS, not anecdote.

[–]Automobilie 0ポイント1ポイント  (0子コメント)

That's what's bad about CFS; there's not much research out there.

[–]vicar-me-baby 0ポイント1ポイント  (15子コメント)

When research is linked, it is almost always a single study. That's not a problem limited to the Phoeniz forums, though - it happens here a lot (and IRL). I've lost count of the times that people have told me that "such and such" is "proven" because "a doctor told me" or "here is a study [singular, with a small size, and probably no control group or placebo comparison] so it is definitely proven".

The hyperbole and overreactions against GET and CBT are classic examples of this. Mention CBT and watch the bad data just roll on into your inbox.

[–]analoguefade 4ポイント5ポイント  (12子コメント)

That's all we have in this disease, a long string of small, single studies going back decades. That's what happens when there is no funding for research. This is the best we have. This is changing though, more and more we are going to see larger, more powerful studies done thanks to crowdfunding, large private donations, and limited government support (i.e. Norway helping to fund rituximab trials).

I'm a little confused by what you're saying about CBT/GET. Are you talking about hyperbole and overractions for or against them?

[–]vicar-me-baby -4ポイント-3ポイント  (11子コメント)

I quite agree with the funding and studies aspect. I added my comments to the page on HBO.

I am talking about hyperbole against CBT in particular and to a lesser degree GET. I often see CBT denounced as if its use implies a psychological cause of CFS, and there is much anger over it, which I cannot fathom. I have no idea where the idea that CBT implies a psychological cause of CFS comes from; especially as it is used to help (for example) cancer patients in the exact same way.

My best guess is that some practitioners of CBT are giving that impression somehow, or communicating poorly with the patients.

That said, CBT and GET don't work for anyone, and neither is a cure. I've had improvements from both, but they were not permanent, alas.

[–]analoguefade 4ポイント5ポイント  (10子コメント)

I have no idea where the idea that CBT implies a psychological cause of CFS comes from; especially as it is used to help (for example) cancer patients in the exact same way.

I'll tell you exactly where it comes from. It comes directly from the investigators of the PACE trial themselves, the singular study that is used worldwide to justify use of CBT/GET for this disease. They are not using it in the way it's used for cancer. The way they are using it is like saying that CBT can cure cancer.

See for yourself:

CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue. The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant's symptoms and disability. Therapeutic strategies guided participants to address unhelpful cognitions, including fears about symptoms or activity by testing them in behavioural experiments.

And a similarly ridiculous rationale was used for GET:

GET was done on the basis of deconditioning and exercise intolerance theories of chronic fatigue syndrome. These theories assume that the syndrome is perpetuated by reversible physiological changes of deconditioning and avoidance of activity. These changes result in the deconditioning being maintained and an increased perception of effort, leading to further inactivity. The aim of treatment was to help the participant gradually return to appropriate physical activities, reverse the deconditioning, and thereby reduce fatigue and disability.

This is why there is so much anger towards these treatments. There is ample evidence that CFS is not due to cognitive/behavioral responses nor is it due to deconditioning and this evidence existed during the time of this trial. Further, there are grave concerns regarding the methodology of the trial. It was only single blinded, non placebo controlled with no objective outcome measures and the investigators did some underhanded shit at the end by changing the definition of "recovered", saying that you could be recovered if you ended with a worse score than when you entered. The investigators refuse to answer if this change was made after the results were unblinded to them. To this day the investigators and UK government refuse to release the raw data from the trial so that it can be analysed by a third party. This trial cost the UK taxpayers over 5 million pounds. Hopefully this gives you a better understanding of why people have such a strong negative reaction to the use of CBT/GET for this disease.

[–]vicar-me-baby -3ポイント-2ポイント  (9子コメント)

Yeah, that's exactly and precisely what I meant by "bad data".

This sort of misinformation damages patients directly (by making them reluctant to get treatment) and indirectly (by making researchers less wiling to investigate possible psychological treatments). It has, in extreme cases, even led to death threats against researchers - some of whom have stopped their work.

The information you have there is bad information. You seem to be quoting the introduction to the study (though those words appear nowhere in the white paper) where they describe the theory behind the tretment they are going to test. If they were testing homeopathy, then that would read something like "The theory regards magic properties of water which has a memory and works on the basis of like cures like."

Also, the psychological aspect, like that same aspect with cancer, is only assumed to be partially responsible for a patient's problems.

From the CBT therapists's manual for the study:

The aim of treatment is to change certain behaviours and cognitive factors, which are assumed to be partially responsible for perpetuating the symptoms and disability associated with CFS/ME

It's a sound theory, and well worth testing.

Oh most impotance, of course, is what the study found. And that's nothing like you claim at all.

We concluded that CBT and GET were more effective than APT and SMC and that the size of the effect was moderate... we are now analysing in more detail what makes these treatments work, and will report this.

And, of course, stated quite explicitly on that page, is the very question we are addressing:

Does the effectiveness of CBT indicate that CFS is a psychological condition?

No. The effectiveness of cognitive behaviour therapy (CBT) as a treatment for CFS does not make assumptions about the nature of the illness. Pigeon-holing CFS as either physical or psychological is not helpful as many if not all illnesses have elements of both. CBT is used widely to manage many medical conditions such as arthritis, heart disease and chronic pain. There is also evidence that CBT can have an effect on the body. For instance it has been recently found to reduce repeat heart attacks in people who have had a first attack. This is because CBT helps to change behaviour, which in turn changes the functioning of the body.

Can't get much clearer than than. The PACE trial authors clearly state in no uncertain terms that the effectiveness of CBT cannot be linked to any psychological cause and also reiterate quite clearly that the CBT treatment used is the same as for other chronic, physical conditions.

The misinformation out there is appalling, but it is widespread.

The ridiculous misinformation about GET is much the same.

Continuing to spread and perpetuate these myths can and will damage patients today, as they may be unwilling to take the only treatments which are known and proven to be effective - even if they do not help everyone.

Oh, and you are wrong about PACE being a singular study used to justify anything at all. It isn't. It's one of a set of studies. It's the biggest study to date, with no other studies showing anything like as good data.

That's another bit of misinformation which has been widely spread about, alas.

[–]analoguefade 2ポイント3ポイント  (1子コメント)

You sound like a shill for the BPS school. The only people I ever see referencing that Guardian story are people that don't believe ME is a real disease and wish to do damage to patients by associating them all with a few aggressive outliers. It really has nothing to do with what we're talking about here and it's a pathetic attempt to discredit anybody who doesn't happen to agree with the BPS theories.

The information you have there is bad information.

It's not bad information. It's pasted directly out of the 2011 PACE trial paper which I linked to. It's their theory and the basis of their experiment. I don't give a shit if they like to doublespeak and say the opposite on their website. The investigators of this trial and their colleagues are very much on record with their beliefs about this disease. These theories are expanded on in the CBT manual you linked to, with the ridiculously oversimplified graphic on page 21. They completely ignore all of the objective signs and symptoms of this disease and focus plainly on fatigue. Should patients just ignore their symptoms of orthostatic intolerance and push through until they become severely hypotensive and pass out on the floor injuring themselves? Should they ignore their polyuria and become severely dehydrated? Should they ignore hypoglycemia until they slip into a hypoglycemia coma? Should they ignore the pain from activity until they develop severe intractable pain 24/7? The model that they have put forward for this disease is ridiculous and the criteria that they used to select patients is equally ridiculous. When you look at it in depth and take into account the work of people like Lenny Jason, you quickly realize that what these British psychs are studying likely has nothing to do with ME. How can you justify applying the findings of a study to a group of patients that weren't even studied?

I really don't understand what it is you hope to gain by heavily promoting CBT and GET here to other patients. The British ME Association recently released a report on CBT and GET and concluded that both interventions in their current form should not be used as a primary intervention for this disease. They advise that an appropriate model of CBT, one used to address comorbid anxiety, depression, and stress should be used, but not a model that advises ignoring symptoms and pushing activity. They advised complete withdrawal of GET until it can be determined exactly which patient subtypes can safely tolerate activity.

You can't take the evidence from one group and just assume it's accurate. If you take the whole of evidence available into account the results are inconclusive and the evidence in favor of CBT/GET is of low to moderate quality, as pointed out in the recent AHRQ paper. In my opinion this is not enough to justify the use of potentially dangerous therapies to a group of poorly studied and poorly characterized patients as a whole.

I will continue to spread the truth of this situation because to ignore it can and will damage patients.

[–]Nihy 2ポイント3ポイント  (6子コメント)

Sorry but I have to correct you.

CBT and GET are promoted in the belief that patients are suffering from a psychological disorder where they falsely believe to suffer from a physical illness. In this model symptoms are the result of a lack of physical activity, the symptoms reinforce the belief of the patient that she is sick, and lead to more rest which further worsens symptoms.

If CBT and GET promoters seem to acknowledge physical symptoms or accept your explanation for them, this is not because they believe in them. They think you're overreacting, misinterpreting or somatizing but will pretend to agree and go along with it as part of "negotiating a treatment" as they call it. When speaking to patients, they go to great lengths to disguise what they truly believe. Physical abnormalities are totally incompatible with this model.

The idea behind GET is that patients are irrationally afraid of exertion and must be gradually exposed to more and more to the think they're afraid of, until they learn that there is nothing to fear. This follows the fear-avoidance model.

Just to make sure there is no misunderstanding: this information can be seen in various texts aimed at health professionals. In public they like to keep things vague and take a less extreme stance.

To a skeptic, the PACE trial itself demonstrated that CBT and GET are ineffective treatments. There were no clinically significant improvements in any of the more objectives measures of health (such as fitness, work, walk test, and others). In the walk test, supposedly recovered patients still had the same scores as patients with severe heart disease.

The authors claimed that CBT and GET were effective based on modest improvements in questionnaire scores. These may simply reflect the lack of a placebo control group plus the efforts to change patient perception (one of the stated goals of the therapy). There are other problems with the study, one is a gross misuse of statistics concerning the definition of recovered on the SF-36 scale. The trial also discredits the fear-avoidance model since the change in perception had no effect on more objective outcomes. The PACE trial, as presented, is essentially fraud.

I will also contest the claim that CBT and GET, if not helpful for most, are at least helpful for a few patients. While the authors refuse to release data for review by others, they did publish some graphs where one can clearly see that nobody has anywhere close to normal physical functioning, and that none of the interventions did anything in the long term.

[–]vicar-me-baby -3ポイント-2ポイント  (5子コメント)

The people you claim are saying things are on record as saying the opposite. As per the links I gave.

I cannot find anyone - anyone - saying what you claim that they say. Can you provide me a link to a reputable source who doea say what you claim they say, please?

[–]Nihy 2ポイント3ポイント  (4子コメント)

The aim of treatment is to change certain behaviours and cognitive factors, which are assumed to be partially responsible for perpetuating the symptoms and disability associated with CFS/ME

This isn't saying the opposite, on the contrary, it is a shorter and softer version of what I wrote. Translation: your thoughts and behaviour are keeping you sick.

Since you asked for reputable sources. This is everywhere in the literature (in some form or another).

Here is a collection of quotes published in literature from key members of the school of psychiatry that has promoted these views.

http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf

Some excerpts:

Helplessness contributes to the expectation that fatigue and pain will follow exertion, forming the first of many self perpetuating cycles that contribute to the clinical picture

It seems that ME sufferers prefer to feel that they have a ‘real’ disease it is better for their self esteem (and) the label ‘ME’ helps legitimise their dealings with doctors

When a psychiatric disorder is not recognised, patients are often investigated extensively for organic disease; there are hazards in these inappropriate investigations, as patients’ beliefs in organic pathology are reinforced

Chronic fatigue may be better understood by focusing on perpetuating factors and the way in which they interact in self perpetuating vicious circles of fatigue, behaviour, beliefs and disability

The perpetuating factors include inactivity, illness beliefs and fear about symptoms, symptom focusing, and emotional state

In recent years they have softened their rethoric but nothing has really changed. They still don't believe that patients have a physical illness. Again, what they say to patients or in public is a sanitized version of this narrative, so it's easy to get the wrong impression that they're just being misunderstood.

[–]vicar-me-baby -3ポイント-2ポイント  (3子コメント)

Did you read my post? I quoted that exact same passage. And gave it the correct context rather than omit it.

Please don't change the subject. We are not talking about individual doctors; we are talking about PACE and its recommendations regarding CBT. If individuals are ignoring the evidence, that should of course be flagged up. But we were not discussing those individuals, we were discussing the testing of a theory and what PACE found.

Can you please provide me with a reputable source who advocates the use of CBT because they claim that CFS is purely psychological, and how that relates (as you claim) to PACE?

[–][deleted] 1ポイント2ポイント  (1子コメント)

Fully agree. CBT and GET may be weak solutions to this syndrome, but it's almost all we have. We need to be more embracing of that reality.

[–]analoguefade 2ポイント3ポイント  (0子コメント)

but it's almost all we have.

This is no reason to keep them around in lieu of solid evidence for their use, which doesn't exist.

[–]Nihy 1ポイント2ポイント  (0子コメント)

You can find various views on PR. Some of the subforums are not good.

There is quality discussion about the philosophy of science as well as latest research too. I highly recommend it.

[–]ZellieMoogle 0ポイント1ポイント  (0子コメント)

I do understand that diet changes can help some people, but when I keep getting told that my condition is all because I eat gluten and don't eat everything 100% natural and fresh it makes me feel like people are assuming that I'm only ill because I just couldn't be bothered to look after myself. That it's my fault that my mitochondria up and quit on me, even though I'm someone that loved exercise, loved fruit and veg, and loved actually getting off my damn ass and going outside.

It's not like I used to spend months every year visiting family out in the Italian countryside - lots of sun, fresh fruit and veg, no computers (because they rot your brain don't you know!), and still started to get ill around that time.......

The other really funny one is "why don't you get more sleep?".... sorry is spending 90% of my time asleep not enough?