Fed up with online recovery stories!!

[Daffodil]

i know its typical to think that what works for you will work for others....but I really wish people would find a way to get to dr. demeirleir. things would stop being so hopeless...I know it.

 

[barbc56]

This is helpful. Why bogus therapies seem to work.

http://www.health24.com/Medical/Dem...y-bogus-therapies-often-seem-to-work-20120721

Can't remember if this is in the article but these unproven therapies take away time and money from finding and studying those things which will help us as well as people focusing on the therapies when the real condition needs to be caught ASAP.

 

[ebethc]

I feel estranged even from these forums sometimes because people talk so much about recovery and I'm far removed from that concept. For me all there is, is daily survival pure and simple until the day I die. Every thing I do has the singular goal of supplying enough function to avoid losing what I have left. That's it.

hope you get a break, Tunguska

 

[ebethc]

i know its typical to think that what works for you will work for others....but I really wish people would find a way to get to dr. demeirleir. things would stop being so hopeless...I know it.

what is Dr D.'s "playbook"? ie, from what I hear, he's super focused on the gut... anything else? OMI is really focused on gut & viruses..

 

[Research 1st]

Hi all!!I need to let off steam so sorry for my rant!! I am so fed up of hearing all the online recovery stories on places like you-tube, where someone did some programme or had some life style alteration and they got better! They make it seem so simple and easy and I only end up feeling rotten and frustrated because it doesn't feel easy to me!! It also makes me feel guilty because I haven't got well!! I don't know if I am been unreasonable and I should just be happy for them and I know some people can improve and go into remission but I just end up wondering if they actually had ME if they got well so easy!! This video started my rant!!! Hope I don't offend with this but this women really made me angry!! Sorry again if anyone actually finds her an inspiration, she just upset me. Sorry again! End of rant!!

It's understandable people can feel frustration having a life destroying chronic incurable illness with Chronic in its name only to have people report, ''I recovered''. This phenomena occurring is not the patients, but the CDC's fault so we have to tolerate non scientific claims at the moment from patients because, as CFS doesn't require a test, anyone can recover. That's the bottom line with CFS, even if it's not scientific, these are the fact because tiredness is subjective and CFS is based on self reported chronic fatigue..

Do I mean we should accept people are spontaneously recovering from organic unexplained to Science CFS which is now clearly a complex disease - due to its chronicity? No. I mean people diagnosed with Fukuda CFS without tests - two different things.

The diagnostic criteria for CFS diagnosis are so unscientific, then there are going to be people recovering
and good for them too who wants to be ill? No one. I'm glad people get their lives back as are we all. It doesn't mean we know what they recover from though. Fatigue? Well fatigue is subjective and fatigue is not the prime symptom of ME anyway.

Not in reference to the videoclip posted or anyone on this forum, but online videos I've seen in the past:

What does bug me and what harms Organic CFS and ME legitimacy is ludicrous stories of recovery, where blatant signs of mental illness are present in the recovered CFS sufferers personal stories, but due to stigma of mental illness, the alleged ex CFS patient likes to adopt the moniker ME to make it sound more serious to 'dodge' the fact they were depressed, had OCD or some kind of denial process about something affecting their lives (breakup, sexuality, redundancy, trauma etc) These people never have a CHRONIC disease (recovering on simple psychogenic positive mental attitudes) but like to claim they did by using the title 'ME' in their online videos. In my view, that's fundamentally irresponsible because they simultaneously make physical and psychological chronic ill health look easily defeated with simple tools. (The reality is that both are usually life long battles).

Diseased patients recovered or otherwise, for Science, the puzzle of CFS is obviously unresolved, we have no test.
CDC caused this by creating CFS, and they foolishly created the phenomena of recovered vs non recovered patients believing (or being told) they sufferer from the same 'thing'....when they clearly don't. We all have a myriad or reasons for remaining unwell, often unrelated but all patients using these words ME or CFS. This gets us nowhere and inevitably we will become irritated at unproven claims of disease recovery,(IOM now state SEID is a disease) so CFS has been 'upgraded' in terms of recognition, although it should be noted SEID has not been officially adopted anywhere. Still, a disease is better than a syndrome if you want legitimacy, which CFS sufferers are craving for.

I've noticed away from ME CFS, other conditions that are hard to pin down can also suffer from a bizarre phenomena of being cured of something that if you look closely, was never actually a water tight diagnosis using strict criteria. MS is a good example. Some sufferers of MS claim they are 'cured' from MS from diet changes, which rightly infuriates people who've had relatives, partners or friends destroyed by or even die of MS! (The 'cured' MS people don't consider if their relapsing remitting MS may have gone into remission before rubbing their diet cure in the faces of primary progressive MS patients. People who may be catheterized and paralyzed and tried everything purported to be the 'cure' all to no avail). Of course it's wrong, but again, people don't think of others first, they think of themselves (not from malice, but from not understanding medical science or from irresistible incentives). E.g. theoretically a cure story of incurable to cured, potentially sells lots of books.

There are numerous unrelated disorders within CFS diagnosis (inc ME, Lyme, POTS), and then in each subset of these, further ailments people suffer from to keep them sick as they remain untreated. Hence, PURE 'CFS' cannot ever exist using CDC Fukuda criteria alone and once we have a test, we won't have the same conditions and can 'split' from each other, real progress at last.

Some Youtube posters cite absurd reasons for CFS recovery, which make the public more skeptical about suffering. This unfortunate inevitability is especially cruel to people severely affected as they tell viewers of their videos they can 'recover' too with positive life changes, (akin to CBT/GET psych lobby) unaware that CFS is not necessarily the viewers CFS or not even caring. For example, some Youtubers if you bring this to their attention in their video will not address this, or even block or delete your very legitimate concerns. This makes your more skeptical about their mental health history which they refuse to disclose whilst insisting an incredible 'change' occurred simultaneously, but still they cannot possibly be linked to cognitive restructuring (self prescribed CBT).

However, there is no need to be venomous or angry, if we again remember, there is no test for CFS. So 'recovery' is a subjective not an objective event, also, 'recovery' from WHAT exactly? We have nothing to measure that is agreed upon.

So all in all, try to feel as calm as possible by being mindful there is no scientific reason to feel upset, because it would be along the same lines as someone saying they recovered from cancer by praying to God or a 'miracle healer' saved them. Some people in Cancer remission think this and promote it online or in the media, but have no proof that 'God' cured them of Cancer (being ignorant or in denial of the way cancer works and can sporadically go into remission).

So the same applies to CFS. Youtube presenters who are magically recovered with wacky ideas (usually taking vitamins, ergo they were vitamin deficient and didn't have any form of CFS to begin with!!!!) are simply unaware of the Science (of organic CFS biomedical research) and don't realize how behind the times they are with a weak knowledge base actually making them look a little silly to people who are aware of how the body works and how you monitor illness medically with objective measures.

The good news:

Biomedical CFS (ME) researchers know what they've discovered. Mitchondria impairment, inflammation, autoimmunity and vascular dysfunction all tying in with pathogens (infections) leading to brain dysfunction etc.

If we address one of these major findings in ME CFS, such as a potential metabolic defect (ATP - raw energy) this alone would have catastrophic effects on cell function to the extent if you had organic CFS you'd not work as a human being, all systems would go haywire and you'd end up with a multi systemic disease, precisely what severe ME CFS is, this would mean, you would NOT recover without cutting edge treatment.

It seems that soon (relatively speaking), the disease 'ME' (often called CFS) will be proven to be associated to such a defect in mitochondrial function, that is new to science, and will lead to a diagnostic test in years to come when the findings are validated. These findings should explain why (overtime) in progressive ME, that immune suppression is prominent and thus why so many patients have problems clearing infections.

Until then, no one can say with 100% accuracy they recovered from a unique disease ME (referred to as CFS) because we don't know what ME is and secondly, you'd have to be deceased to be autopsied if you wanted to prove you had ME severely (this happens in Alzheimer's as there's also no test) to show the brain damage associated to inflammation...which is impossible when alive with ME using current neuroimaging technology. This could change in years to come though - see Jarred Youngers ideas and others research findings

So as hard as it seems, just try to accept eccentric Youtube presenters who say they recover on unlikely or impossible 'medicine' because they are referring to their CFS, not yours or mine which because of Fukuda CFS criteria, never need to exist as a disease, to begin with - hence they 'recover' (from whatever gave them CF) and that is just their personal experience of their 'CFS'.

Also with regards to obviously misdiagnosed jumping on the 'I had ME' videos and was in bed for years and now I'm cured by jumping in the sea and swimming 50 miles, try and listen to their 'story', presented usually in the press, and there are often huge holes in the tale. The 'recovered' bedridden ME now recovered people ALWAYS lack the potentially dangerous and often highly disabling co-morbid conditions, that we know are associated to untreated long term severe ME cases, that would STILL keep them disabled, even if ME was cured tomorrow!

Examples of these 'on top of ME CFS' conditions so many of us develop over time of untreated ME CFS:

Other disabling autoimmune disorders appearing in ME CFS (Sjogren's Syndrome, Lupus) -disabling - very disabling
POTS or severe autonomic nervous system dysfunction - very disabling
Lyme infection and/or its co-infections -very disabling
Pituitary dysfunction with out without hypoglycemic reactions - very disabling if left untreated (e.g. hormonal deficiences)
Chronic viruses and infections - very disabling
COPD/Fibrosis (inflammation) -very disabling
Asthma (allergy/inflammation) -very disabling
Heart Failure - very disabling
Cancer - no explanation needed
Neuropathies (nerve damage)
Osteoarthritis
Kidney or liver problems - disabling or hospitalising
Allergies and Anaphylaxis reactions - very disabling if untreated
Mast Cell Activation Syndrome - very disabling
Ehlers Danos Syndrome - also associated to POTS and Lyme
PCOS
Chronic Immune system activation
IgG subset deficiency - leading to infections
Blood disorders (rare)
Sticky blood/Hughes Syndrome - dangerous if not detected and disabling
Migraine and severe disabling headaches - very disabling
Vertigo or other vestibular disorders to the extent you can't walk or leave the home - very disabling
Photophobia requring sunglasses even indoors
Hyperacusis preventing normal social interaction outside
Tinitus
Epilepsy or other Seizures - intermittant disabling or on medications, disabling
Fainting or pre-sycope
Chronic Pain - disabling
Gastrointestinal dysfunction, inflammation, or disease - disabling

etc etc...the list of ailments of what organic CFS ME does to people is hideously long, such as is the serious nature of having ME, which is not a 'fatigue' disorder like Fukuda CFS or F48.0 psych CFS (often called ME).

Hence as we can see in summary, until proven otherwise, there is no hard scientific evidence anyone recovers from ME (as we don't know what ME is). In contrast anyone can legitimately recover from CFS (because it only requires self reported CF of 6 months or longer) so it doesn't mean anything much to hear a CFS recovery story other than unintentionally de-legitimize severe CFS and ME- until there is a diagnostic test and then these people then kindly test themselves in the interest of science.

One last important fact to consider with 'high functioning' very short lived episode of CFS who recover within months, they forget CFS has to last for at least 6 months BEFORE diagnosis. So If you had CFS for 1 year ignoring this rule, then you'd then technically only be ill for 6 months!

January 2015 CFS Symptoms Start.
June 2015 CFS diagnosis starts in doctor's office,
December 2016 Patient reports recovered from CFS.

That is not a chronic disease. The recovered people's illness are thankfully short lived ill. Think why, as they aren't CHRONICALLY ill and thus don't have CHRONIC Fatigue Syndrome (the giveaway is in the name, believe it or not) but another reason for fatigue.

Commonly misdiagnosed Youtube stars who were 'very fit' can have TATT or burnout:

1) TATT (Tired all the time) and Burnout. Both are not CFS but are commonly misdiagnosed as CFS. Burnout can also produce deconditioning POTS (not true autonomic dysfunction) leading to postural tachycardia (POTS is a lot more than just tachycardia, but this is the ONLY abnormal test required for POTS!). Burnout patients misdiagnosed with CFS or POTS tend to 'recover' by gently doing more (graded activity with breaks), and never exceeding their limits - PACING (ME patients are 'PEM' at rest 24/7). As over-training (burnout) don't have an underlying disease, in time they are indeed 'recovered' by making life-style changes such as dropping a perfectionist attitude at college/work (and sport), taking sleeping tablets (for better sleep and energy) avoiding stress and having a far better diet . That is not CFS or POTS, but burnout which runs down your immune system and commonly comes on after a virus (as does CFS).

2) Some people with CFS are misdiagnosed because they have pseudo CFS but the physician doesn't care who diagnoses them because they believe CFS is always depression and aren't interested in a quality clinical practice standard. High functioning CFS (at time of diagnosis) do NOT meet the criteria of 50% reduction in
previous activity level that CFS requires - thus cannot have CFS using these rules (we have no test yet).
NB: Times may change, when people at 99% functioning can prove they have 'CFS', but currently, you must be at 50% or less to qualify for a diagnosis.

All of this doesn't matter, any more in view. Private researchers who exist on tiny donations will change history for the better, in the face of government denial and total refusal to spend the correct amount of research dollars required to save lives. As officials bury their heads in the sand, the mitochondrial and pathogen research should be replicated in multiple countries eventually. I feel the people with chronic neuroimmune diseases (linked to this energy defect and associated infections) will then be finally siphoned out of the 'CFS' label for good, and then CFS can be rightly for people who are just tired all the time for unexplained causes (which will always be present in society as fatigue is the more reported ailment in the doctors office). Then we can all get along with each other and not be offended or upset when the carrot dangling infront of our noses (the invisible cure) when what we need is apples not carrots, to keep the doctor away.

The most worthwhile CFS project to donate to at the moment is at the Open Medicine Foundation.
http://www.openmedicinefoundation.org/the-end-mecfs-project/

Maybe the small number of recovered Youtube presenters whoperhaps monetize their videos would kindly make a donation to the disease they managed to beat, as now they can work and aren't impoverished like us. It would be a nice gesture if thousands of their viewers could follow suit and help advance the research.

 

[Daffodil]

what is Dr D.'s "playbook"? ie, from what I hear, he's super focused on the gut... anything else? OMI is really focused on gut & viruses..

he believes the illness is caused by intracellular bacteria. his team is the only one who has done genetic sequencing on tissue

 

[Hutan]

This is helpful. Why bogus therapies seem to work.

http://www.health24.com/Medical/Dem...y-bogus-therapies-often-seem-to-work-20120721

This is mostly very good.

But it's a shame to see the following from

Dr Barry Beyerstein, noted scientific skeptic and professor of psychology, wrote in Skeptical Inquirer

that

3. The power of the placebo effect.
The belief that we are taking treatment which can cure an illness, causes powerful forces to effect an improvement through mind-body connections. This is called the “placebo effect”.

And just what magical powerful forces might these be? And what do these mind-body connections look like?

I would have thought the placebo effect was actually the sum total of the other six reasons e.g. temporary mood improvement (hope) leads to temporarily feeling better; psychological need to report an improvement after spending money and time on a cure; illness naturally resolves or naturally moves into a less severe phase.....

 

[geraldt52]

...until proven otherwise, there is no hard scientific evidence anyone recovers from ME (as we don't know what ME is)...

...All of this doesn't matter, any more in view. Private researchers who exist on tiny donations will change history for the better, in the face of government denial and total refusal to spend the correct amount of research dollars required to save lives...

The most worthwhile CFS project to donate to at the moment is at the Open Medicine Foundation.
http://www.openmedicinefoundation.org/the-end-mecfs-project/

Maybe the small number of recovered Youtube presenters whoperhaps monetize their videos would kindly make a donation to the disease they managed to beat, as now they can work and aren't impoverished like us. It would be a nice gesture if thousands of their viewers could follow suit and help advance the research.

I truly believe all of this. People who are younger, or who have been sick a relatively short time, should take great hope in the quality of research,and researchers, that we now have. Had we had this sort of effort 30 years ago, I doubt that I would still be ill...at least not as ill. I am afraid that with each passing year my age and length of illness doesn't bode well for my recovery. Still, I contribute what I can and hope for the best.

 

[Snow Leopard]

The advice in the video isn't that off base. The main point that I differ on is the level of control we have over our illness. If you are lucky enough to be spontaneously recovering, then you will see improvement from that 3 minute walk to that 10 minute walk, to more serious exercise like scuba diving. Unfortunately, many of us aren't that lucky. Those who are lucky enough to improve often attribute the things they were doing at the time to that improvement, even if it was just a coincidence.

Her illness certainly sounds genuine, though it is quite likely that those people who recover after 1-5 years have different underlying pathology to those who don't. If you're reading this and you haven't been ill for that long, then maybe you'll be one of the lucky ones. Who knows?

 

[alex3619]

I think there is a huge issue occurring, in the medical and health bureaucrat thinking as well, that I would call a category mistake. Fatigue, pain and depression are best thought of as symptoms, not disorders.

Let me run a similar theme , hypothetical of course:

[Satire] Suppose I had a chronic headache. I then chewed some willow bark, and presto, the headache went away. Then I got some more pains, and it sent those away too. Marvelous. I have found a cure for all pain. That includes cancer, heart attacks, migraines, severe bodily injury ... everything. I should put a video on youtube! [End Satire]

I think a lot of these people are genuine, just mistaken or claiming more than they can demonstrate. There are reasons that anecdotal evidence is considered the lowest level of evidence in terms of reliability. Ask yourself this question - if you found something that you think helped you, wouldn't you want to share it? I would. The issue is really about the strength of the claims made about it. Is it cautious, scientific, or gung ho and damn the evidence?

There is a huge problem that people conflate the notion of chronic fatigue with defined CFS (which is much more than fatigue), and defined ME (which is much much more than fatigue) and so on. I think similar problems occur with depression. When you treat a common symptom as a disorder you muddle dozens or even hundreds of things together. You lose distinctions too. I am sure that a heart attack and a headache are not the same kind of pain. This problem occurs with every CFS diagnosis, and probably with ME as well. We do NOT know for sure its all one disease. With CFS its very unlikely, and with ME, even well defined, it might still be several different diseases. We await the definitive and replicated science.

I think medicine in general, and psychiatry in particular, have gone down a very wrong path in doing this so very often. Not every doctor falls into this trap, nor does every patient, but it leads to poor analysis and invalid conclusions when it happens. Nor do people fall into this trap all the time, just far too often.

The best thing to do if these kinds of claims are annoying is simply to ignore them. That also applies to friends or relatives or the grocer who says try yak fat or whatever their advice is. They mean well, they want to help, they just don't know enough to really give good advice. Sadly that even applies to many doctors.

 

[alex3619]

Her illness certainly sounds genuine, though it is quite likely that those people who recover after 1-5 years have different underlying pathology to those who don't.

From the Lipkin-Hornig findings we can surmise that short term and long term ME patients will have different pathophysiology, at a different stage of the same disease. Further, at under one year it might be hard to differentiate CFS using Fukuda from regular post viral fatigue.

We really do need biomarkers. Most of these questions, and claims, will start to vanish with diagnostic biomarkers. Those that do work will then gain more credibility.

 

[ebethc]

he believes the illness is caused by intracellular bacteria. his team is the only one who has done genetic sequencing on tissue

interesting.... I don't know much on that topic, but I always thought it was related to lyme... (borellia, et al)

Where does the intracellular bacteria come from? displaced microbiome bacteria? is it bacteria that everyone has and PWME just can't clear it?

 

[L'engle]

I'm sure the woman in the video means well but I honestly couldn't get past the first minute. Hearing words like 'epiphany' and 'commitment' just sounds like all the same "you can get well if you really try! you must not be trying!" stuff. Maybe it gets better further in but yeah I can see why this was aggravating to the OP. (sorry can't remember who started this thread. guess i should be more committed to getting over my brain fog. maybe an epiphany would help.)

 

[Comet]

I couldn't get past the first minute of video. It's hard to believe that someone who suffered from ME would start a video aimed at sick people, who often have dizziness issues, with all that camera spinning.

 

[barbc56]

@Hutan wrote:
But it's a shame to see the following from

Dr Barry Beyerstein, noted scientific skeptic and professor of psychology, wrote in Skeptical nquirer

I've never particularly liked the term skepticism as it's often taken to mean argumentation just for the sake of arguing. That is far from true. The original word comes from the ancient Greek philosophers and had a somewhat different connotation than today. It's suppose to be the opposite of dogmatism where knowledge is static verses believing knowledge can evolve or change. In its pure form when applied to science it means going into an experiment without a bias of how it will turn out. Emphasis on "pure form". It means considering all possibilities before coming to a conclusion.

This is more in sync with my definition of skeptism.

the doctrine that true knowledge or knowledge in a particular area is uncertain : the method of suspended judgment, systematic doubt, or criticism characteristic of skeptics

The belief that we are taking treatment which can cure an illness, causespowerful forces to effect an improvement through mind-body connections. This is called the “placebo effect”.
And just what magical powerful forces might these be? And what do these mind-body connections look like

I don't think he meant that literally but figuratively though I have to admit the wording is a bit too dramatic. I would be quite surprised if any skeptic would say there's a magic power. I interpreted it as meaning exactly what you said.

I would have thought the placebo effect was actually the sum total of the other six reasons e.g. temporary mood improvement (hope) leads to temporarily feeling better; psychological need to report an improvement after spending money and time on a cure

I think this says it better than I can.

The placebo effect is the measurable, observable, or felt improvement in health or behavior not attributable to a medication or invasive treatment that has been administered. The placebo effect is not mind over matter; it is not mind-body medicine. 'The placebo effect' has become a catchall term for a positive change in health not attributable to medication or treatment. As is explained below, the change can be due to many things, such as regression to the mean, spontaneous improvement, reduction of stress, misdiagnosis in the first place, subject expectancy, classical conditioning, etc

 

[Hutan]

@barbc56 , your quote defining the placebo effect is great.

I'm not sure if you got my point, although maybe you did.

The six other reasons Dr Beyerstein listed for 'why bogus therapies seem to work', cover most of the various reasons for the placebo effect as listed in your quote. But he still felt the need to add the seventh reason which he termed 'The Placebo Effect'. This he defines as:

The belief that we are taking treatment which can cure an illness, causes powerful forces to effect an improvement through mind-body connections.

That could be 'subject expectancy', a subset of the placebo effect, but it's not the placebo effect in its entirety. And, he covered subject expectancy a bit in two of his other reasons - the charismatic therapist and the personal investment in the treatment. He really seems to be suggesting that something medical (and powerful) happens to effect a real improvement rather than just a temporary distortion of interpretation.

I may well have a bee in my bonnet about this. But I have seen people talk about the placebo effect in this way before - narrowing it down to some ill-defined idea of 'think you are well and you will be!' when there are in fact lots of more concrete possibilities for the placebo effect. And it just seemed a shame to have a self-identified skeptic trotting out mind-body connections and unspecified powerful forces.

Ok, I'll stop blathering on. I have a migraine and thinking feels like wading through mud. I hope something made sense.

 

[Forbin]

Although anecdotes correlating a particular intervention with recovery should be viewed very skeptically, I think the concept of unexplained remission is one worth considering.

In light of the recent study by Dr. Hanson that showed that the reduced diversity in the microbiomes of ME/CFS patients resembled those seen in Chron's diseases and in chronic ulcerative colitis, it's worth noting that both of those diseases are known to go into remission, sometimes lasting years.

http://www.healthline.com/health/crohns-disease/understanding-crohns#1

I recently read that in a given cohort of chronic ulcerative colitis patients, half of the patients are in clinical remission at any one time. Both Chron's and CUC are thought to be autoimmune in nature and they have objective, measurable, physical signs.

Interestingly, this 2010 study found that patients in long-term remission from chronic ulcerative colitis had elevated levels of the chemical protaglandin D2. The authors thought that their findings might extend to Chorn's disease as well.

Summary: https://www.sciencedaily.com/releases/2010/06/100614160155.htm
Full paper: http://www.pnas.org/content/107/26/12023.full

Of course, it is possible that the similarity between the microbiomes of IBD and ME patients is only of superficial significance, but it does seem conceivable that, just as in IBD, some people with genuine ME/CFS experience genuine long-term remission for reasons that are not understood.

- - -
​

Dr. Bell was asked at a lecture in December 2016 if anyone recovers from ME/CFS. He replied that about 5% of patients do recover. He was clear that these cases were no different from the other cases he had studied. He had no explanation for their recovery.

Question:"The 5% that may be recovered... since there isn't a lot of testing done yet, could it be that those 5% don't even really have SEID, or CFIDS, or Iceland Disease or whatever you want to call it?"

Dr. Bell:"Yeah, but I don't think so."

Question:"You do think that 5% might actually recover?"

Dr. Bell:"Oh, yes.

Question:"Oh, really?"

Dr. Bell:"Yeah. That's something that I've looked at very intensely over the years... I wanted to know what did they do that was different - that caused them to recover. Did they exercise more, or less; did they take more vitamins, less vitamins; did they eat better?

"Now Lyndonville is a very small area, and I was the only physician in the area - so I kind of had a lock on these patients - and I was nice to them - I tried to be nice. And after looking at this, about half of the patients ate terribly. You know, they'd go to McDonald's every once in a while - and the other half ate meticulously - very good foods - and I didn't see any difference. Half of them had lots of vitamins, half of them did not... So I couldn't tell.

"But what I was quite sure about was that they had the same illness.So, I had lots of ways of measuring the severity, measuring the complexity of the symptoms. For example, I was very intent on measuring the degree of lymph node tenderness. That's an unusual symptom - so that if you have rheumatoid arthritis, that's not one of the things that would happen.So I'm quite sure they all had ME/CFS and there was a subset that clearly did get better."

Question:"And you never had any inkling of what it was? [That caused them to recover]"

Dr. Bell:"Not an inkling - -"

[See at 46:52 in the video. He had mentioned the 5% recovery rate earlier in the lecture as well.]

 

[Ben H]

This is the issue when we dont have decent criteria used consistently, have a poorly designated illness name, and most importantly (which would help resolve the above) a biomarker.

Many many people are misdiagnosed. They then feel it pertinent to post their recovery story for CFS/M.E, when in reality, their illness is very different to CFS/M.E.



B

 

[Valentijn]

It also makes me feel guilty because I haven't got well!

I would ignore this sort of crap. It always comes down to people trying to sell something. If they aren't looking for money, they're looking for recognition that they are somehow superior and able to overcome biomedical illness with their amazing and enlightened minds

 

[Living Dead]

Worse, if you're not getting better it must be because "you may get worse before you get better".

Yes, that really irks me. 99% of the time it's false. Especially when people use the word "herx" to legitimize it. A herx is a phenomenon that only occur in response to rapidly killing off certain types of bacteria.