You may wonder why the CAA treats XMRV the way they do... So:

[Wayne]

I'm truly sorry if I alienated anyone by mentioning the nice cool, sunny, clear weather that we are having here in Los Angeles. It was not my intention to offend.

LOLOL

Do I detect another person with a roguish sense of humor who can't seem to control themselves?

Wayne (A citizen of the Rogue Valley in So. Oregon -- Really!)

 

[Martlet]

I'm truly sorry if I alienated anyone by mentioning the nice cool, sunny, clear weather that we are having here in Los Angeles. It was not my intention to offend.

To someone sitting in the heat and humidity of the Midwest, your post could be construed as extremely offensive. ;-)

But of course eveyone knows that's not what people are reporting.

 

[Wayne]

So, how bout them Dodgers?

With my CFS and brainfog, I haven't kept up with major league baseball for while. But I'm curious, how are Sandy Koufax, Don Drysdale, Maury Wills and the rest of the gang doing these days?

 

[urbantravels]

me, smart mouthed? I DENY EVERYTHING.

my sister says, however sick I get, she'll only really worry about me if I stop being a wiseass. hasn't happened yet

 

[omerbasket]

I don't have the time to go back and pull up every reported post, nor do I have a desire to, but people do know when they are being rude.

Yes, they probably do. So why won't you erase Cort's message accusing V99 of "lacking credibility" in his opinion?

It's not fair that only one side is allowed to say rude things, whereas when the other side have to come down to this level, the moderator threatens to lock the thread.

 

[Martlet]

Yes, they probably do. So why won't you erase Cort's message accusing V99 of "lacking credibility" in his opinion?

It's not fair that only one side is allowed to say rude things, whereas when the other side have to come down to this level, the moderator threatens to lock the thread.

I am not going to enter into a public dispute on this, but I will remind you that each and every one of us - moderators and administrators included - are here because Cort has kindly provided us with a discussion forum. The rules of engagement are there for all to see and read - and presumably to agree with since that's a condition of membership. If this thread is not back on track after this message is posted, then I will lock it.

 

[Sunshine]

The people to really blame for being ill are the CDC. The CDC hold the keys to XMRV and a potential cure. The CAA are a patient advocacy organisation for CFS and CFS includes people who are mentally ill and that's a fact.

To expect the CAA to be the WPI over XMRV is not realistic. Remember we turn to the CAA, because the CDC are intellectually deaf. The CDC should be helping the CAA and advising them, they are not at all.The CAA have to support at least some part of the psychiatric view of CFS, unless the CAA change their name to 'ME' or 'Neuro Immune Disease' due to what the CDC evolved CFS into. CFS has indeed, evolved over time. With this evolution psychiatrists have a had a total field day with the original illness and now claim silly figures that are in some cases X2 or X4 elevated over previous definitions. This makes 'CFS' common, and therefore less serious. All part of deceiving the public that CFS is no big deal. Ironicaly the latest Empiric Definition of CFS actually is no big deal.

It is unfortunate (for the severely affected and XMRV people) that the CAA have kept the name Immune Dysfunction, in the name of the organisation but go down the 'CFS' route instead. It is not unfortunate for people with CFS that this does not affect.

This could maybe be addressed soon? It makes people suspicious (rightly or wrongly) the CAA has transposed from biological organic disease CFIDS to the less stringent 'everyone's invited to the party' CFS. CFS isnt' a neuro immune disease, but a syndrome of chronic fatigue that has been diluted to the now proposed 'fatigue and 1 symptom'. Obviously, ME and CFIDS are not 'fatigue and 1 symptom'. Some people are furious as they have neuro immune disease and have been told they have CFS, which they don't, but 'do' because the CDC said so. CFS diagnosis excludes people with abnormal neuro pathology, and people with this have ME and/or dysautonomia etc.

Tragically, the patient does not know this, and keeps using the name CFS!!!!! They then get mad at the CAA, forgetting the CAA represents people with CFS, and not people with neuro immune disease, which the patient THINKS because of the name CFIDS Association of America in the acronym, CAA. As frustrated as people may be with the lack of progress the CAA has made over decades over maintaining CFIDS as CFIDS (rather than CFIDS into CFS), the reality is the CDC knew all along about XMRV or they wouldn't of covered it up, and the CAA did not know about XMRV.

Unless the CAA are linked to the CDC, the CAA are 'just' an organisation for CFS and nothing more. I don't think there is any evidence that the CAA are linked to the CDC? If there was, that would be an entirely different matter. As much as we'd like to think the CAA (or anyone else respresenting us) are going to help us, what is or should I say, who is 'us'? We aren't united and never will be until there is a diagnostic test for XMRV, ME or CFS. Until then we're tri-lingual people thinking we all speak the same language which we cannot.

CFS label represents many people of different types, unlike any other disease which is why CFS is not a disease, but a syndrome. 'Just' a collection of symptoms that now means very little. You've got 'Old Skool' CFS patients with maybe 45 symptoms, livid at newly diagnosed CFS patients with maybe 5 symptoms. The Old Skool people, are forgetting they don't have CFS, but ME/Neuro Immune disease. The 'newbies' obviously do not. This is the CDC's fault (via Dr William Reeves) for destroying what it means to get a diagnosis of CFS.

ME patients, mentally ill people, misdiagnosed people with other diseases that haven't been detected, etc etc are all told they have 'CFS', which is ludicrous in the extreme. This is why the CDC literally 'invented' CFS, to hide a neuro immune disease within lots of types of people. People who will always argue and disagree because they don't have the same underlying cause. A quite brilliant idea, if morally cruel.

CAA may well truly 'represent' CFS, and the people this infuriates with neuropathy and incontenance and even paralysis don't have CFS but XMRV or another neuro immune disease. The problem is in the name that the CAA use of their organisation that leads to confusion. If CAA changed it's name to the Chronic Fatigue Syndrome Association of America, all the criticism would end overnight from the severely affected. It's the Immune Dysfunction in the name of the CAA, that people don't like and feel it's not accurate of what the CAA have been doing for a long time.

CFS Association of America may well be a more modern name to use, than 'CFIDS' which although a good name, was never accepted by the CDC and other influential groups. 'CFIDS' thus died. CFIDS name was proposed as an 'Americanised' version of ME, to separate CFIDS from CFS, because Americans were so upset that CFS label had been created and this didn't explain their illness or symptoms accurately. For reasons we now understand (under the shadow of XMRV), this all makes sense why it was never adopted.

Immune Dysfunction in CFIDS, is rather too close to AIDS for the CDC. AIDS = Aqquired Immune Dysfunction Syndrome, which too involved a retrovirus called HTLV-III that became HIV........... Little did we all know. Or we did know back in the day of Elaine DeFrietas, but the CDC did a hatchet job on that in persons with CFIDS. We only get mad at each other as the real people who are paid to look after us (government) aren't doing a single thing for us. And that's the CDC. A Centre for Disease Control. We mustn't forget that.

I'd love to see the CAA going hell for leather on XMRV, but they cannot as they embrace CFS and that's just the way it is. Maybe the CAA need to explain this to people? There is no way that XMRV is in all cases of CFS. The WPI have said this. Ideally, the CAA will need to be suggesting this, that XMRV means people cannot have CFS and were misdiagnosed by the CDC, when they had an infectious retrovirus. We need to stop the car, shake hands and go our separate ways amicably and sensibly.

The reality is this:

*XMRV people in America use the label CFS to validate their illness, this needs to stop. If you have XMRV, you cannot by default, have CFS. You may have ME though. ME describes what XMRV could do to people.
*XMRV people in UK use the label ME/CFS, or CFS/ME to validate their illness. Ditto. Lets leave CFS to people with CFS.
*CFS people in UK use the label ME, when they do not have ME at all. This needs to stop and will do if ME patients turn out to be all XMRV+, which is increasingly likely.

NB: In the 2010 InvestinME International Conference. Dr Klimas (Professor in Immunology), said when Americans say they have CFS they mean they have ME. This is partly correct. If so, Americans should start using the word ME, and quick smart. ME is a neurological (ICD-10, G93.3) after all, and not a syndrome.

We then come full circle.

This is why Americans dreamed up the term CFIDS which the CAA is named after. CFIDS Association of America. The CAA in the future can please state who it represents. CAA maybe needs to think quickly which way it's going as it cannot accomodate both people with ME and neuro immune disease and XMRV, whilst simutaneously 'doing' CFS advocacy. (Hence the bad feeling in some circles).

As just mentioned, this could be done by taking the words Immune Dysfunction out of the CAA's title and changing it to CFS Association of America which is far more appropriate. After all the CAA's campaign is called Solve-CFS, not Solve-CFIDS. Noticed that? Then we'd all be clear, and they'd be far less tears, upset and bad feeling which at the end of the day, should be directed towards the people who caused XMRV to explode in the population and who refused biomedical research grants for persons with the label CFS. That was the CDC, NIH and FDA blocking Ampligen etc etc.

The origin of this entire CFS tragedy, is the people who sat down that fateful day and CREATED THE NAME CFS knowing full well that ME (Myalgic Encephalomyeltis) had been a neurological disease since 1969 and that is what they were dealing with. These men, have created a terrible legacy for the world. The CDC did that. It starts and ends with them, literally and the CAA are nothing to do with it, they just unfortunately use a term (CFIDS) that needs to be removed to add more accuracy to the person's the represent. I hope that's a fair evaluation and doesn't upset anyone.

 

[V99]

Not read your whole post yet, but people were not misdiagnosed with CFS. The CDC ignored the disease they were meant to be dealing with and created the fictitious entity CFS.

Also, questions are being raised about the CAA out of interest, not personal disagreement. They at one time worked with the CDC, which is why so many patients mistrust them.

Here is a link to the CAA tax return for the year ending December 31, 2007. It shows that the CAA has received money from the Governmenthttp://www.bbb.org/charity-reviews/national/health/cfids-association-of-america-in-charlotte-nc-1310

Source of Funds
Government grants 1,881,388
Contributions and grants 1,281,030
Membership dues 145,252
Interest and other 34,976
Educational materials sales 11,631
Total Income $3,354,277

Here is a link to an article that talks about a grant from the CDC to the CAA, and how CDC officials attended at CAA screening of Seabiscuit.
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0309D&L=CO-CURE&P=R1834&I=-3

Are there any dots that can be connected between the facts that the CDC
does not favor a name change (indeed, why should they? - they came up with
the name CFS, its definition, and have ardently defended it ever since),
that many luminaries from the CDC attended the CAA's screening of
Seabiscuit, that at this screening the CDC announced an additional $100,000
grant to the CFIDS Association for "Physician Education," and the
concurrent publication of "The Branding of CFIDS" article, which calls for
the abandonment of the work of the Name Change Working Group and starting
fresh with the CFIDS Association (and the CDC) firmly in control?

 

[V99]

I completely understand where you are coming from, but want to add one more piece. Once XMRV people are separated from the chronic fatigue construct, we may still have many who do have an organic disease, perhaps even another retrovirus. We cannot abandon them. We must fight to have all diseases without a cause, that psychiatry has captured, investigated and treated appropriately.

 

[leaves]

*nodding*

Actually I would not be surprised if "psychiatry" is a science of the past. Even diseases such a schizophrenia or OCD, or bulimia may very well have a physical origin (think infectious, nutritional or genetic). Actually there is already evidence that bacterial infections can cause OCD But this is a (very) long run view unfortunately. It would be a liberation for many though, an end to blaming the victims.

 

[Robyn]

I agree with V99. I also agree that no one should be left behind regardless of XMRV status. The name CFS needs to go away for all. They also need to stop calling what they don't yet understand a mental disorder.

 

[Sunshine]

I completely understand where you are coming from, but want to add one more piece. Once XMRV people are separated from the chronic fatigue construct, we may still have many who do have an organic disease, perhaps even another retrovirus. We cannot abandon them. We must fight to have all diseases without a cause, that psychiatry has captured, investigated and treated appropriately.

This is correct, but this will never happen if the cook book of illusionary 'medicine'; that is the DSM-IV and now DSM-IV remain. People can and will get left behind. After all, we have had this happen to us and there will be another 'us' in the future.

Why? Because of psychiatry and its usefulness to the state as a form of mind control over the populace to not question, how/where/why are our children are getting these neuro immune diseases.

Essentially, anyone now without a 'proven' illness is captured by the cult of psychiatry and jailed within a fictious theory when in all cases, the sufferer (and often parents) are blamed!!! Previously we were just called mad. Now we are given a much more 'politically correct' label that is deemed less offensive, but still places the honus of responsbility of recovery on ourselves and away from the pathogen or allergy or 'insult' that is the true cause.

MS, Parkinsons, Diabetes, Epilepsy, ME/CFS - all blamed on fear of sex in women, or hysteria in women etc. Hysteria, comes from meaning the state of being 'a woman'. Seriously. :worried:

How genius was it, that in ME/CFS the huge obvious diagnostic criteria of post exertional exercise flare via cytokine rush/gene expression and other biological markers was reverse engineered to be the tonic to get better!!!! Deception. It cannot get more blatent than that. (Akin to smashing one's head against the wall to treat head injury).

To do as you suggest (to investigate and treat appropriately a plethora of other retroviruses, organic CFS type illnesses) is a good idea V99. Yet, critically, one will have to halt the mad monks on the march to their bank account to draw another $100,000 check for 'bigging up' an anti depressant to treat another horrendous illness that comes along, that has nothing to do with depression.

--------------------------------------------------------------------------------------------------------

Think of how ME/CFS has 'morphed' from one accusation of BLAME to yet another over decades:


1970's:

ME remains as non paralytic polio and Japanese Encephalitis etc. World Health Organisation accepts it's a neuro disease and does nothing. Very rare condition. No children or teenagers have it. No discussion. Nothing on TV, Newspapers. Black out.


1980's:

*Late 1980's ME/CFS cases exploded in USA/UK and the disease cannot be contained and became 'public'. Bring in the psychiatrists to 'manage' the situation and stop mass panic by blaming the unfortunate people with this condition.
Rename the condition chronic tiredness sydrome and drastically alter the diagnostic criteria to make ME a 'free-for-all' condition.

*Tell the media ME/CFS patients are rich fortunate women from fortunate backgrounds (Yuppies).
*Tell the ME/CFS patient their parents push them too much, and maybe are crazy too (Mom gets blamed usually).

*Put the ME/CFS child in care and try and jail the parent if they protest too much.
*Throw the ME/CFS child in a swimming pool to see if they really drown.

1990's:

*Tell the ME/CFS patient they are depressed, but they don't realise. (Finally scrapped by psychiatrists).
*Tell the ME/CFS patient they need to exercise more and this makes them better (Mostly now scrapped).

2000's:

*Tell the ME/CFS patient to brain wash their fear of activity away, so they can do more activity. (Currently in use via CBT).

*Tell the ME/CFS patient to 'pace' their lives, and if they limit what they can do by using an activity diary, their fear of getting worse can be evidenced as 'doing more' so the person will do more and be less scared. (Currently in use via CBT and activity diary with pacing).

2010:

*Tell the ME/CFS patient they were probably phobic of exercise at school and this is why they developed ME/CFS

*Tell the patient they were probably sexually or physically abused as a child and this is why they developed ME/CFS as they cannot cope with 'stress'.

-------------------------------------------------------------------------------------------------------------

Personal greed is driving medics who although once learnt medicine in University and medical school, now practice medical fraud. They are perfectly allowed to do this (legally), when a disease has no proven organic pathology, and this is how it will stay. (It's cheaper for governments this way and absolves them of all blame). NB: Psychiatrists make the rules up as they go along. If they didn't, they'd be doctors and practice medicine in hospitals or in the community as they should do as they are MD's. Psychiatry gives you the ultimate opportunity, to play god with your patient (even drug them) and no one can stop you. How enticing is this to sociopaths?

As you know to your cost, us patients are used for finanical gain and there are massive vested interests at work that capitalism and the obsession with 'status' only encourages. I agree we should fight, but we need to seperate the soccer team into sides first, as currently our team members are not in our team and disagree with fundamental issues - all caused by the label CFS. (Ironically the CFS team, isn't a team either. Half on holiday, sick, or drove 60 miles the wrong direction and ended up playing baseball not soccer).

The state wants this. They don't want or need a diagnostic test. If there is any danger of one happening? Simply loosen the diagnostic criteria again. This is exactly what Bill Reeves and Co, has done. And so it goes on and on and on. CFS would eventually end up in the DSM, the bible of invented illnesses that don't exist. This is (terribly) what has happened in 2010. How did we get to this point again? See above............

We may have learnt our lesson, but sadly too late. The public are brain washed via the corporate biased media, they have no idea what is going on and never will do. Politicians learn faster than us as they plan your next move - remotely. There will be no fanfare with XMRV or the next retrovirus discovered either. It will be controlled, and quietly we will be directed to the immunology/neurological department along with people with MS or Lupus. Nothing more, no scandal.

We cannot ignore the huge psychological consequence of being mentally attacked on all sides for decades simply by having three letters next to our names in medical files - CFS. Humans can and do become robots in order not to be terminated via meek compliance to those who terrorise them. People with ME/CFS are victims of medical terrorism, yet we are called 'Jihad CFS Terrorists of Health' by Dr Mark Boriani the second XMRV was linked to ME/CFS. How kind of him, but how typical of arrogant people who remain uncorrect and unchallenged.

We forget who we are as people with long term 'CFS', because realising who we should or would have been is too painful for people affected for 30,40years. By this, I mean resistance is not futile, but it's been kicked out of us. (We've taken so many beatings we are a compliant abused and battered wife who smiles in the mirror whilst applying foundation over sores and cuts and awaiting the next terrifying bellow downstairs as the front door is slammed).

Where are the abused CFS patients on youtube crying in floods of tears? Hardly any, if any. Too much self respect and pride, and too much shame for that to happen. (We are well trained, automatons. We dare not say a word, for fear of being recognised in public by our neighbour, never mind our friends and doctors). Conversely there are lots of Gay men (previously targeted by the state and called 'scum' by most people back in the 1950's). They cry all day long on youtube knowing people will understand WHY. So CFS is the new most hated stigma of the medical profession. As Judy Mikovits said, CFS patients are 'in the closet'. V99 you are not, but you are rare.

Think how the WPI was formed. Someone's mom effectively made it!!!! How bizarre, but how telling. What on earth are people's moms doing building neuro immune centres daisy chained onto a Cancer center? She took the lead, as you are suggesting we all do V99, but she is fortunate as she has a wealthy husband, and influence due to seeing the 'best' doctors, namely Dan Peterson. The rest is history. Most do not take the lead and wait and wait and wait for others.

Incredibly, then sufferers themselves have become institutionalised within their own illness label of CFS and feel comforted by it. In other conditions too there is some resistance to Autism being 'revealed' as retrovirally induced brain damage, which in some cases it is. Too great to consider for parents that is, too painful. 'Jimmy' the challenging but lovely young man in his own world with few friends is easier to see as just 'Jimmy' our Jimmy (by mom and dad) than Jimmy without XMRV induced autism who could have been a lawyer and wooed the girls due to his dashing blue eyes - eyes that sadly now look only at books on trains and buses, of which there are 542 on the shelf in alphabetical order. It's easier to accept and deal with Autism and pretend 'Jimmy' didn't have his brain ruined by XMRV at birth. Hence Autism people dream up magical terms and pet names for their kids and claim they are 'blessed' and 'special'.
(Why would an Austistic be more 'special' than any other child?. Just a defence mechanism by mom and dad to cope with severe neuro issues that ruin kids lives). The last thing these types of parent want is being told their kid has XMRV.

A big barrier we have V99, is people themselves are scared of the truth. The powers that be work on this through faux reassurance of the well used but appropriate saying: There is nothing to see, please move along. (We are hearded like sheep into a pen, and get used to chewing one very worn and parched piece of lawn). To 'see' the lush grass that lays in open ground, yards from our noses takes education, and it takes impetus, even if people are no longer fearful.

Our immense failing (tragically) is our brains in ME/XMRV/CFS etc are too exhausted to be able to physically make the effort to make change happen. As much as we wish the world to be fair and moral, the world is largely a horrible mean place that few can enjoy unless fortunate or healthy. WPI in this respect are like an angel alighting on our shoulders. They will guide us, and I feel if possible people should donate $10 per month to the WPI. Change may come V99, but slowly. Humans feel comforted in what we know, and are universally worried of the unknown. We thus kill and maime in countless wars, instead of spending money on space exploration and spreading love and peace. Love and peace benefits all, yet selfishness benefits US. Hence we are all inherintly selfish people. Chronic disease (in some) forces us to open our eyes and see the inequalties of life and unequal distribution of chance and opportunity. Yet, in comparison, being a heralded CFS psychiatrist, praised from all corners by the state and guzzling on extreme wealth, does not. For these people, insight ended at University/College after they got the MD.

The end message is, humans are essentially evil, manipulative and selfish people. We have to be, to kill and survive. We need to kill to eat, except food now comes pre-packaged. 'Good' people,often fear God, we are thus good because of fear. And religion thus controls us, from fear of reprisals by being bad. Many many people though, are Godless and faithless and fear no one and instead project fear and self hatred onto other people. (I'm not suggesting non religious people are bad people!). Just that region is a wonderful tool to control us.

Psychiatrists are experts in doing harm via 'theories' of genuine suffering of disease and pain, being made into a psychological construct of a beacon for distress and attention seeking. (How the CDC view people with CFS). If these dangerous people are doctors and fear no one, they can do exactly what they damn well wish, with no guilt or remorse................Enter stage left, Professor Simon Wessely and William Reeves with the giggling head of the UNUM in the theatre wings counting his profit and others we have no idea of.

You will never, ever for one second beat the state or the modus operandi they have. All we can do is love and protect people we care for and pray for others that times will change. In XMRV, times will change. In CFS and other CFS type conditions? Without a diagnostic bio-marker, they are doomed because evil people need a slave, and 'sick' diseased people are desperate for help and easily, easily manipulated and controlled.

By definition there can never be a bio-marker for CFS because what CFS is. A state of CFS happens in Diabetes, Hypothyroid, Lupus etc etc. These folk won't meet the biomarker for CFS though. To 'Solve' CFS as the CAA suggest, you need to kill CFS and find out why people are ill. CFS by definition does not allow an explanation for why people are ill. Meaning a bio-marker that LASTS for CFS, is impossible.

I am hoping the CAA mean they wil Solve CFS and create a new disease that is no longer called CFS. That is possible. NB: Dr Light's work explained in the CAA 'Webinar' would mean people cannot have CFS because it shows organic pathology. CFS is 'unexplained' by definition. CDC caused this, they could have said CFS has gene induced exercise changes (for example), or Cytokine expression after exercise (for example) but does not as then it shows CFS is not psychiatric but organic and theories on child abuse and 'resistance to treatment' is void.

Criminals know where to go, and the CDC know what to do with 'CFS', I can assure you. For CFS, 'XMRV' just opened up a whole new world of hurt. The CDC website is outrageously cruel in how it describes CFS, who cares other than V99 and us people on here? People in the street believe what they read, they trust doctors and definately trust the CDC. Why wouldn't they? We can do nothing, but donate money to people who are commited to a bio-marker for CFS that then emerges as another new disease. That is our ticket out of the death camp we were born into in this 'modern' CCTV Big Brother - you will comply or be tazered - world.

People accept (via brainwashing) 'you resisted' as an excuse for the Police to pass an electric current through a person's body (torture). If humans accept torture is normal (even in public in front of children), then they will not care for one second about your 'Chronic Tiredness' Syndrome. Poor dears, they think and walk off. Society is increasingly uncaring, violent and dangerous. People have far more on their plate to worry about, than 'CFS' and some freaky retrovirus called XMRV. Big deal, they think. The ball game is on at 7pm on ESPN HD and my mother-in-law wants $932 for the car insurance.

The sunshine is out there, and it's waiting for us but the majority (not all) of people don't believe it's there anymore and THAT is one giant hurdle. Literally, the only way to escape is to become mini doctors and scientists ourselves and that is very very hard, when we are not all blessed with high IQ's and the ability to learn new information when suffering from neuro diseases. (Hence the brilliance of the internet and sharing information and learning new information).

The CAA is here to educate us patients and the public and hopefully they can do that. As for the CDC? They're already inventing the next 'CFS' for the Swine Flu Vaccine reactions when these people produce babies with mysterious immune reactions. Lets see where that goes in 20 years......

 

[omerbasket]

I am not going to enter into a public dispute on this, but I will remind you that each and every one of us - moderators and administrators included - are here because Cort has kindly provided us with a discussion forum.

True. But it doesn't mean that he's allowed to be rude...

 

[kurt]

*nodding*

Actually I would not be surprised if "psychiatry" is a science of the past. Even diseases such a schizophrenia or OCD, or bulimia may very well have a physical origin (think infectious, nutritional or genetic). Actually there is already evidence that bacterial infections can cause OCD But this is a (very) long run view unfortunately. It would be a liberation for many though, an end to blaming the victims.

A bit OT but I Totally agree with this. One other candidate, besides infections, is B12 deficiency and/or insufficiency. B12 problems can alter neural function, and are know to cause paranoia and anxiety, as well as fatigue, strange nerve sensations (or neuropathy), and dozens of other symptoms. And of interest, one of the associated conditions with B12 depletion is anorexia. Someday when the psychiatrists start studying medicine again maybe they will figure out that many psychiatric conditions involve underlying biological conditions and are only triggered by psychological events and not caused by them.

 

[Cloud]

Hi, CBS and the group.

I just want to note that quite a few PWCs have taken Dr. Amy Yasko's nutrigenomic panel, and one of the genomic polymorphisms on this panel is a deletion in the ACE (angiotensin converting enzyme), which converts angiotensin I to angiotensin II. This deletion causes an elevation of angiotensin II, and PWCs very commonly have a homozygous (+/+) result for this polymorphism. Since many PWCs also have diastolic dysfunction, which results in low cardiac output, as well as having POTS, I think there might be a connection here. Thanks for posting this.

Hi Rich,

I have often thought of this as a possible contribution to ME/CFS, in particular the OI and the Cardiac symptoms. I would really appreciate hearing more of your thoughts on this. Thanks much.

 

[Hope123]

Being overweight predisposes you to getting diabetes... THAT is a fact.

It is also a fact that if you do not control your diabetes and eat sweets it makes it worse.

Why do you have a problem with me saying this?

A lot of people get diabetes because they don't watch what they eat. They allow themselves to turn into balloons and then run around wanting our overworked medical professionals to catter to their poor eating habits.

I mentioned specifically some people get it for other reasons... Some however are irresponsible.

My ex-grandfather in law... knew he had diabetes... he could have managed it much better... instead he ate whatever he wanted, and had to have his toes amputated. That was his choice.

Please read my words more carefully.

The point i am making, is that when one of these individuals comes into the clinic, the doctor knows the issue is predominantly one of diet, exercise, and essentially discipline. If they fix that, the illness goes away.

Look, I'm not here to debate with you about diabetes. I have limited energy and I need to use it in other ways. I haven't pulled rank on this forum but I have more clinical and personal experience with diabetes than your average person on the street.

Obesity does increase the risk for diabetes -- I'm not saying it doesn't as there is plenty of evidence for that -- but many people get obese from consuming more calories in than they take out through exercise. Those calories may or may not be from sugar (carbohydrates); it might also be from fats, proteins, etc. so saying that eating more sugar causes diabetes is not accurate. There are people out there who are obese and yet don't consume much sugar at all; instead, they might eat a lot of potatoes (not a sugar to many people although it is a carb), steaks, sausages, etc.

In addition, it's NOT all about diet/ exercise/ discipline -- ironically enough, this is like telling people they can "recover" from CFS if they try hard enough. For some people, diet and exercise can control their diabetes entirely and they never have to take medicines but the reports out there are about 50% of people eventually need a pill or insulin over time IN SPITE of their healthy diets/ exercise/ etc. I have had patients who felt they were a "failure" (just like my relatives did) because they could not control their diabetes without medications but this isn't their fault. One thought is that as diabetes progresses over time, the pancreas makes less and less insulin. There is still much we do not know about diabetes - ask any good endocrinologist. Good diet and exercise may help the medications work better and do lower blood pressure/ cholesterol levels that are co-factors along with diabetes in stroke/ heart attack risk so they are still important but not the end-all.

I respect your interest/ work in setting up a CFS advocacy site and am sorry your grandfather had a hard time with diabetes but I would advise you to read more before making general statements about diabetes.

 

[Eric Johnson from I&I]

A deplorable lack of personal responsibility certainly causes or contributes to a lot of problems in this world. Maybe including some cases of obesity. But it's somewhat true I think that some people over-indulge various vices partly because of low levels of well-being.

A more interesting and tractable debate than that, though, involves the work of Gary Taubes (BA, physics) and the somewhat-dissimilar work of Robert Lustig (pediatrician-researcher). Both suggest that the wrong diet, one humans have not evolved for, causes excessive appetite and excessive fat deposition - a heterodox view. There are long videos of both men on the net. The facts they adduce are extremely fascinating and not very easy to dismiss. I cannot say that I have any real idea, though, whether they are right or not. I have made very little effort to study it. I used to have more zeal for knowledge a few years ago.

 

[urbantravels]

It's interesting you should mention Gary Taubes - who is a science journalist, not a researcher, and the scourge of bad science. I have been a big fan of his for years. (And in my somewhat-informed opinion, he is absolutely right about diet - "Good Calories, Bad Calories" is one of the best-researched and fact-checked books in existence on the subject.)

I have really longed for Gary Taubes to take on the scientific controversy surrounding CFS and the most recent XMRV kerfuffles. I would love to see his take on it.

 

[Eric Johnson from I&I]

I shouldn't have said he was a BA in physics. He may be a BS, which usually is significantly more rigorous. Anyway he got it at Harvard and he's an MS in aerospace engineering from Stanford. Not that any credentials guarantee anything 100%, but they convey probabilistic information. Especially credentials in physics, which is more demanding than bio - so is aerospace, I'm sure.

I'm skinny but I look about two, three months pregnant down around the waistline. This trait (though I show it only moderately - so far) apparently is rather strongly associated with multiple horrendous diseases of later life - heart disease, stroke, and Alzheimer's, that I know of. I don't know whether the association is purely causal, partly causal, or non-causal. Both raw waist circumference and waist:hip ratio can have a relation. I must confess I ingest very large amounts of sugar.

 

[Eric Johnson from I&I]

When he finishes with obesity and CFS I would love to see him take on the whole idea of psychogenic disease. Like Kurt and others above I'm significantly skeptical of almost all of it, except maybe PTSD. I have looked for broad papers shring my perspective and haven't located any yet. Many 'anti-psychiatry' people like Thomas Szasz have a perspective quite dissimilar to mine.

I've said it before but since someone mentioned OCD, Susan Swedo found OCD was 10-15x more common in the immune-related disease systemic lupus. Yet it is probably not a psychological reaction to being physically diseased (something that is certianly possible a priori), because it seems not to be more common in conjucntion with other diseases. Most diseases are pretty much psychologically the same, at bottom: they suck, more or less severely - but I guess they are not completely the same. I suppose lupus is a little different because it can fairly often put severe skin rashes on the face.

I've got some OCD right here, and it's not quite mild. It started at the same time as everything else, when it was all still just starting to get going.