A short sad history of ME/CFS

[clouty]

I'm posting a history lesson, because it has huge implications for public health, and that includes the health and well being of you and your family. I was never one for a conspiracy theory, preferring to favor the muck-up theory of misdirection and error, but I have done a lot of studying in the last eighteen months, since I have been ill, and I am afraid the evidence is all there to support the following hypothesis. I am fighting for effective treatment, and that will take an increased awareness of the problem, hence this post.

For more than two decades, a deliberate muddying of the diagnosis of a serious chronic neuro-immune disease has misdirected much research. The disease Myalgic Encephalomyelitis was renamed Chronic Fatigue Syndrome, by the Centre for Disease Control in the USA, in the late 80's.

Because the criteria for diagnosis of Myalgic Encephalomyelitis has been weakened to the point that the people diagnosed as could include those without neurological symptoms, because the criteria (CDC's Fukuda 1994(1) and worse, the 2005 revised version(2) and the British Oxford definition(3)) diagnosed as people who had unrelated illnesses, the common ground being chronic fatigue, the research could not and did not reliably study Myalgic Encephalomyelitis.

The fake diagnostic criteria mentioned above also deliberately proscribed the many tests that would allow for a positive diagnosis, rather than a diagnosis of exclusion.

Meanwhile, people who actually had myalgic encephalomyelitis were misunderstood, mistreated and marginalised.

This process of confusing a specific biological disease with the very common symptom of Chronic fFatigue began at about the time that the financial impact of another illness caused by a retrovirus, HIV/AIDS, was becoming clear. The patients with ME/CFS were not dying like flies, and their illness helped make them invisible, as most were housebound and unable to protest, impoverished by years of illness. The disease became a stigma, patients were assumed to be depressed and lazy, yet ironically and conversely they were also and at the same time accused of being type A personalities who had burned out.

Neither of these explanations were true, for those placed in the ME/CFS patient cohort who actually had Myalgic Encephalomyelitis by the Canadian Consensus Criteria(4). These patients were suffering a neuro-immune disease caused by an unknown pathogen, perhaps viral, perhaps retroviral. It was a devastating disease, described by some patients as a living death. A percentage of patients were bed bound, tube fed, on morphine pumps and unable to tolerate light or noise. Many of the infected were teachers or medical professionals, and some families had two or more people who were ill with CCC ME (Canadian Consensus Criteria / Myalgic Encephalomyelitis).

The cost of treating these patients (there were more of them than in the HIV crowd) was something that governments were happy to avoid, dealing as they were already with HIV/AIDS, and helping to avoid tackling this illness head on created a career path for the unscrupulous, deluded and greedy.

Two and more decades on, private funding into ME/CFS by the parents of a young sufferer helped to refocus some (not all, more later) of the scientific community on seeking the true causation of CCC ME. The Whittemore Peterson Institute at last held out some hope, for people who had been seriously ill for decades. They published a study in Science in October 2009(5), showing by one method that 67% of those CCC ME patients tested had a retrovirus, Xenotropic Murine leukemia-virus Related Virus. A second testing method showed XMRV in 95% of the patient cohort.

Within weeks, another study was published in PlosOne(6), (7), after allowing 3 days for peer review. The WPI study was under peer review for six months. This new British study was commissioned by the notorious psychiatrist, Simon Wesseley, who had managed, over the last couple of decades, to become the pundit on all things CFS. Here are some quotes from him:

Professor Wessely has said:
"In Britain, people with chronic fatigue think that if they do too much the virus that caused it is still there and will come back and make them worse. That is catastrophising the illness. They don't think like that in France and they don't have the same outcomes. It is how you respond to symptoms that determines the outcome."

"We?re not going to go doing more and more tests to find out, well what was the virus, because frankly, even if we found it, there?s nothing we?re going to do about it.?

" What lies behind all this talk of viruses and immunity ?... In consequence, talk of viruses and the immune system is now deeply embedded in popular consciousness ... Viruses are an attribution free from blame ... there's no blame, no shame and no stigma ... and here is the virus research doctor himself to protect us from that shame... And what is it he delivers? Respect!"

"Many patients referred to a specialized hospital with chronic fatigue syndrome have embarked on a struggle. This may take the form of trying to find an acceptable diagnosis, or indeed, any diagnosis. One of the principal functions of therapy at this stage is to allow the patient to call a halt without loss of face. ..... [M.E. patients are in] a vicious circle of increasing avoidance, inactivity and fatigue....... "

"Most CFS patients fulfil diagnostic criteria for psychiatric disorder. Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. .... Do any of these symptoms possess diagnostic significance? The answer is basically negative... The description given by a leading gastro-enterologist at the Mayo clinic remains accurate. 'the average doctor will see they are neurotic and he will often be disgusted with them.' "

"Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time off work, benefits, etc)"

The man's cruelty knows no bounds. It would not be that extreme to accuse him, and his American counterpart, Bill Reeves (of the CDC), of a crime against the human rights of a seriously physically ill group of patients.

Since the Imperial College/Wessely paper was published in PlosOne, there have been other negative studies, and other positive studies. All the negative studies have two things in common. They used the loosest definition of the disease, either the Oxford or the Amended Fuduka (CDC 2005), and they failed to use the methods that were used by the WPI, despite having been given access to the techniques and positive control samples.

As someone said "They forgot to take the lens cap off the microscope"

The really sad thing about all this is that if good research had been allowed centre stage in the late 80's and early 90's, when Dr. Elaine DeFreitas(8) first found a retrovirus in CCC ME patients, and if related research had been given the backing that it warranted, then many many fewer people would now be infected with XMRV.

This gamma retrovirus, XMRV, was first found in cases of Prostate Cancer (>30%), and has also been found in other sarcomas and Autistic Spectrum Disorder patients. It is possible that this, or other retroviruses are responsible for causing Parkinsons Disease, Alzheimers, Multiple Sclerosis, and other brain and nervous system malfunctions.

A retrovirus is distinguished from other viruses by it's ability to insert genetic material into the host's DNA, effectively hijacking the host cells for its own ends. They are sneaky, lazy, and they make you ill. To date, we know of three exogenous human retroviruses: HIV, HTLV and XMRV. They all make people sick.

There is a lot of work to do yet before we discover the full impact of exogenous retroviruses on humans, but a great start has been made. And yet, in the UK, all public Medical Research Council funding for ME/CFS goes to psychological research.

When questioned why this is, the MRC say that "no applications of sufficient quality asking for funding for medical research into CFS have been submitted". This is patently untrue(9). Between 2002 and 2008 there were 33 applications for funding for biomedical research into CCC ME.

The truth is that the Department of Health, umbrella department of the MRC and the NHS, rely on Simon Wessely, Peter White, Trudy Chalder and other psychiatric types for advice, and this group have built an influential empire on muddying the definition and mistreating the patients with CCC ME.

They believe that exercise and CBT is all we need to get well. Currently, there is a study in process at Bristol University of the Lightning Process® under Dr Esther Crawley(10). They are going to subject children, some of whom really will have CCC ME, to a positive thinking regime sold by a pyramid selling technique, and invented by Phil Parker, who is doing very nicely thank you. This cannot be said for those CCC ME patients who have been through this process. As with the NHS program of Graded Exercise Therapy, the course encourages patients to ignore the symptoms of their disease. If this was all in the mind, then yes, it may work. But for children with a serious neuro-immune disease, it can, and has, aggravated symptoms to the point where they can no longer function independently at all, and are consigned bed, relying on others for all personal care.

Esther Crawley's study will include 90 children between the ages of 8 and 18. This is unethical, when there has yet to be a study of the Lightning Process® in adults. The strange thing is, Phil Parker does not allow criticism of his results on his website (and there is criticism, oh yes(11)).

People do die of complications of CCC ME: of cancers, of heart disease, of suicide because they can't stand the pain any more. Here is a list in memorium. It is by no stretch of the imagination extensive, or comprehensive.

1/ www.annals.org/content/121/12/953.full?guid=on (Fukuda 1994)
2/ www.biomedcentral.com/1741-7015/3/19/ (Reeves 2005)
3/ www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf (The Oxford Definition)
4/ www.co-cure.org/ccpccd.pdf (Canadian Consensus Criteria)
5/ www.sciencemag.org/cgi/content/abstract/1179052 (WPI study, 10/09)

6/ www.bmj.com/cgi/content/full/340/feb25_1/c1099 (Wessely/McClure Imperial College XMRV study - I see no ships!)
7/ www.bmj.com/cgi/eletters/340/feb25_1/c1099#231969 (be sure to expand the comments section)

8/ www.ncf-net.org/forum/revelations.html (on the DeFreitas study,1991)

9/ www.meresearch.org.uk/information/publications/casetoanswer.html (MRC funding bias explored)

10/ www.bris.ac.uk/news/2010/6866.html (Bristol Lightning Process study)
11/ www.biomedcentral.com/1741-7015/3/19/0 (criticism of the Lightning Process)

thanks leonie

Clouty, you said
"This is about the health of you and your family, as well as me and mine. I am fighting for our lives."

Well I have to say, as someone who had ME for 8 years and had to crawl around my flat and sweat and sweat and sweat, have black pepper baths, pureed food, chronic long muscle pain...etc etc I eventually learned

NOT TO FIGHT M.E.

You need to give in to the ME to get out of it.

You need to respect your body, up your trace mineral and vitamin intake, and eat healthily, going for organic meat and veg and not eating pesticide and heavy mineral doused food. And you need to rest when you're tired, and rest again to get over the resting.

I also had candidasis where I had even the fungus in my blood.

Prescribed and Alternate therapies, meditation, yoga, prescribed anti fungals, grapefruit seed extract, massage, detox (including colonics) and even getting Hg metal fillings taken out helped me recover COMPLETELY in 8 years.

Good luck to you - and do yourself a favour, and drop the anger and the fighting - you come across as very abrasive and ranty ranty, so chill sista.
You need to use all your energy to heal.

You are not to 'fight' for me - you do not have my permission to be on a mission on my behalf!

Get well, and stop fighting it.

I put greater trust in peer-reviewed research, and then in a fairly standard heirachy standard of evidence, because it's more likely to be accurate.

Primarily this is because we, as a species, are prone to cognitive bias and are very easy to fool.

So we have to set up protocols that avoid these confounders, as best we can, and this is the best way of answering a particular question.

Now this doesn't mean all knowledge is found in such publications.

But when we have such a great mismatch with uncontrolled anecdotes & small, pilot studies being preferred to a consensus of evidence comprised of a large number of independent, high quality, interlocking studies from many working groups in many countries I'm going to put my trust in the latter.

What is also telling is that patient experience you mention is from two of the smaller patient groups, the larger ones seem not to have any issues.

So when you say it's "highly important" and "vital" to be treated with both T3 & T4, do you mean:
for some/all with hypothyroidism?
for some/all with subclinical hypothyroidism?
for some/all people with non biochemically proven hypothyroidism?

"In 2003 a report by the Survey and Statistical Research Centre, Sheffield Hallam University, showed the annual cost of ME to the UK economy to be around £3.5billion." LC9

"I'm not sure that's an accurate way of describing that information." DBennett

I have no idea how I described the information. That is what the report showed. That is not to say the design of the report was not flawed. Also, the idea that Action for ME is a patient advocacy group is laughable. The point is that ME has an enormous affect on the economy, a little money into biomedical research would do a whole lot more good, then wasting it at the wrong end. It is a shame no one has in fact bothered to do a robust study into this issue. You just want to think I highlighted the study as a positive thing. Clearly I did not.

As for per-reviewed research. Well, every journal is different. Some don't need it, others have a very rigorous process. There are also many places where sending your work to a particular journal means having your mates assess the value of it. The other difficulty is funding. Studies that would look at these issues do not get funding. Not because of the quality of the proposed work, but because of the ideological bias held by those who are judging the proposal. Getting rid of cognitive bias is almost impossible.

zazen, there are many ME patients who already had the lifestyle you describe before they became ill. The reason why they are still ill is nothing to do with the food they eat and the sleep they get. You probably had something else. So many people are being misdiagnosed with ME these days (I should say CFS), because the criteria for the disease has been corrupted. Therefore Clouty will not be fighting for you anyway.

My point, however unclear that might have been, is that the study has almost nothing to do with the SSRC.

And, although this is unrelated to that issue, the final sum is not likely to be accurate.

My concern is that the publication is being promoted as being by the SSRC to side step the appearance of potential bias as the report is done by Action For M.E.

Which meets my criteria of patient advocacy group with mission statements such as:

"Action for M.E.'s mission is to improve the lives of people with M.E."

and

"We were founded in 1987 by people with M.E. for people with M.E. We continue to be led by people with the illness and their involvement at all levels is vital to the organisation."

This doesn't by itself alter the reliability of the report, the methodology does that, but for it to be passed off under a different name is disingenuous.

P.S.
I only know of one journal, which is worthy of that name, without peer review.
That has editorial review and is probably making the switch to peer review within the next yr or so.
It is a vital part of the scientific method.

DBennett, I agree with your assessment of the economic report, and AFME.

Here is an example of the lighting process:
www.x-eed.com/page/services

Have a look at the list of things they are claiming that this made up, untested, unmonitored, scheme works for.

"What Does It Work For?
......
Parkinsons Tremors
Motor Neurone Disease
......"

Disgusting.

So they take dying peoples money and claim they are gong to make them well.Truly truly disgusting.

Although I agree that LP is unlikely to have benefit beyond placebo & symptom management (like CBT if you will), I also think it's much more likely that those involved in LP do believe they're helping.

They don't have much reason to think that way but that is not unusual in alternative @ complimentary therapies.

Wishful thinking rather than confidence trick.

The The ME Association and the Young ME Sufferers Trust have just released a statement on the lightening process:
www.meassociation.org.uk/index.php?option=com_content&view=article&id=1363:scientif ic-trial-involving-children-and-the-lightning-process-is-unethical-says-joint-statement-issued-by-tw o-national-me-charities&catid=30:news&Itemid=161

"A plan to recruit children with ME/Chronic Fatigue Syndrome to a scientific trial comparing the efficacy of an unproven psychologically-based training programme with specialist medical care is ?unethical?, say two of Britain?s leading ME/CFS charities ? The ME Association and the Young ME Sufferers Trust."

Here's another quote from their statement:

"Despite many years of scientific research there is still no single diagnostic test for ME/CFS, nor is there a curative treatment. The theory upon which the Lightning Process is based, together with its claim that the prolonged nature of the illness is caused by ?the adrenaline, nor-adrenaline and cortisol loop? is not scientifically proven. Moreover, the Advertising Standards Authority recently ruled that an advertisement in an internet sponsored link containing claims of its effectiveness by a Lightning Process practitioner should be removed. We understand that the practitioner will be involved in this study and we find this concerning. "

and this:

"We cannot approve of a study involving children as young as eight when no rigorous trials have first been undertaken into the safety, acceptability, long and short-term effects of the application of this controversial and unregulated ?process? with adults.

Furthermore, we have serious concerns about the primary outcome measure, which is school attendance after six months. Children have a legal right to ?suitable education? for their particular needs, which may or may not include school attendance. "

zazen said "You need to give in to the ME to get out of it.

You need to respect your body, up your trace mineral and vitamin intake, and eat healthily, going for organic meat and veg and not eating pesticide and heavy mineral doused food. And you need to rest when you're tired, and rest again to get over the resting.

I also had candidasis where I had even the fungus in my blood."

Along with some other stuff that makes it clear s/he quite missed the point.

Which is, because of the lack of positive diagnoses (the tests required are not allowed on the NHS) and because of the number of different conditions that are put into the wastebasket called (by the CDC in the 80's) CFS, there is no effective medical treatment available for CCC ME, and the research is skewed, with the 5000 good studies sidelined and the Medical Research Council not giving any funding to biomedical research.

I do all the things you do, zazen, and I hope it takes me less than eight years to get my life back. Isn't it a shame that it should take even that long? Isn't it a shame that some people have been ill for decades? Isn't it a shame that the current method of treatment actually causes aggravation, for people with CCC ME? Look at the case of Sophia Mirza - her treatment was what killed her, in the end.

It is wrong that so many should be ill for so long. It is wrong that sick people should be marginalised and disbelieved, impoverished and untreated. And why?

en.wikipedia.org/wiki/Sophia_Mirza

www.youtube.com/watch?v=y7VdXX9P58w

www.youtube.com/watch?v=rpgYTsCtcYw&feature=player_embedded

I am glad you managed to recover, after eight years.

It took me 2 years to get diagnosed with cfs, was very frustrating it took so long. I was doing everything I could to try be healthy and nothing helped. Finally after numerous gp visits and expensive (very unhelpful and arrogant)consultant I went back to my gp (was different one in practice as other was on maternity leave) and she diagnosed cfs.

I started graded exercise programme.

There does not seem to be a lot drs can do.

So sick of the exhaustion, headaches, pain, aching, feeling nauseous so often, leg tremors, confusion, memory difficulties, insomnia, night sweats.

I wish more doctors would take it seriously, I am so glad my current gp knows a little about it and actually believes it exists, which is more than a lot of gps.

When I was in Italy for 2 weeks I think it helped a little. It was 28-30'c and blue skies and sunshine. I think the better light and sun was good for me.

Not sure if you are saying if the exercise programme helped or not.

The truth is that exercise programs do not help for ME, as it further damages the malfunctioning biological process of the patient. The studies that are cited as showing exercise to help, when looked at, were not actually studying ME patients. They also fail to use an objective outcome measure to analyse whether the patients did indeed have any recovery or were made worse. To be blunt they are scientific fraud. The doctors that use exercise to supposedly help these patients therefore show how ignorant their understanding of the underlying biology is. They have accepted the repeated lie that there is no biological evidence, and merely regurgitate the falsehood because it is easy.

The truth is that ME was long held to be a serious organic disease, occurring in both sporadic and epidemic cases. That is until the CDC in the states got involved and created the entity CFS, which was never meant to replace the disease ME. To this day they state CFS is not ME. However, they have no diagnostic criteria in use for ME, and so those with ME are lumped in with the mixed bag of CFS. In this country ME was in use from 1956 to the early 1990's. When the disease was highjacked, by psychiatrists, who have no place to be dealing with a organic disease, and now we have CFS/ME. Another fictional construct, whose purpose is to hide the disease ME.

Their time is up though, XMRV will be in the news in the coming weeks. No one should be under any illusion, they let it spread, out of bigotry, ignorance and plain old stupidity.

If it wasn't for online forums like www.foggyfriends.org, most of us would be quite alone and unaided. For sure, there is little that most doctors know or do for people with CCC ME. In fact, many deny the disease exists. I wish that it were so. But this illness is all too real. Thank heaven for the internet, that gives us the ability to help each other, because at the moment, the medical profession are no use at all.

There was radio podcast yesterday, by the Vice-President of the blessed Whittemore Peterson Institute, which pretty clearly gives the current state of play - it's an hour long, you can hear it here www.publicbroadcasting.net/kunr/news.newsmain/article/1/0/1685395/Nevada.Newsline/Chronic.Fatigue

As LC9 says, things are changing. I just hope that the moneybagses and the empire builders don't destroy the good research again.

The graded exercise has not helped yet hasn't made it worse but hasn't made any noticable difference.

What have you tried that actually made you feel any relief of symptoms?

My theory about myalgic encephalomylitis is this. A recently (within the last ± 100 years) evolved retrovirus, XMRV, which is sneaky and a bit of a wimp, is in 4 - 10% of the population. When someone's guard is down, due to infection, accident, abnormal stress or whatever, the immune system can no longer keep it under control, and it replicates in nerve, reproductive and brain tissue. It is hardly in the blood stream at all, which is why it is hard to find and treat.

Because the XMRV now has the upper hand, and has disregulated our immune system for its own ends, other viruses such as Herpes, Papilloma, etc, which most of us are carrying but keep under control, have a field day. We can no longer fight off bugs, yet many people are asymptomatic, because the symptoms we experience with colds and 'flu are in fact our immune system's response, not the bug itself at all. Our immune system is on the floor. The XMRV may also be affecting the messages sent from the brain to the various bodily systems, making us ill, without a cause that can be found in blood or urine.

Because we all have a different mix of viruses which change in dominance and effect, symptoms vary from person to person, and from time to time, and different treatments help different people.

All we can do at present is support our various systems - digestive, heart, liver, brain etc - by good nutrition, extra helpings of nutrients, vitamins and minerals, antibiotics (though they have major drawbacks) and natural antivirals. Plus, support the immune system and the amygdala by having as much fun and laughter as we can, reducing stress, and trying Low Dose Naltrexone.

If this theory is correct, and research currently underway pans out, then we will be able to treat the root cause with antiretrovirals, such as have been developed for HIV/AIDs. Because this XMRV is a wimp, apparently recent research shows it to be far more susceptible to ART than the HIV retrovirus, and it is possible that after a year or two of such therapy, a person (me! you! all of us! please!) could be completely cured. With HIV people are on ART for life.

ART is pretty aggressive treatment, and not all types suit all people. It really needs to be prescribed by a doctor who takes a strong interest in outcomes. However, some of our sickest feel they have nothing to loose, and have started various forms of ART, and I am reading their reports with interest. Jaimie Deckoff-Jones is a Doctor herself - here's a link to the blog treatingxmrv.blogspot.com/2010/05/personal-report.html

Meanwhile, online forums (see my last post) are more use than the GP, sadly.

The only thing I have been allowed to try is pacing and rest. This is not the pacing that those conducting the PACE trial talk about. This is the true patient version of pacing, where you stay within your energy envelop. The minute you go outside this, symptoms are exacerbated. The psych's have highjacked pacing to twist it to fit there ideological POV, and to make money from it. Their version involves increasing your activity, true pacing does not, it requires that you listen to your own body. Which of course cannot be a therapy.

Rest means again listening to your body. If you need to sleep do so. Try to stick to a routine, of sleeping at night, but if your body needs it in the day, sleep. You only make yourself worse by ignoring what your body is telling you. I have not been able to exercise for 17 years now, I really miss it, but I have improved a lot since I was young. I listened to my body, and used pacing and rest. The psych's will tell you this is impossible, clearly it is not. They are lying. Of course not everyone will have this response even if they do that. It comes down to how sick you were at the start, how old you were, and more importantly what the underlying cause of the disease is. CFS is a wastebasket.

Other treatments would be things like drugs for the reactivating virus's I have been told I have. Expert ME doctors in the USA and Canada will try all sorts of things. Drugs for Orthostatic intolerance, POTS, pain. They do this because they look at the biology of the patient, and choose to treat ME patients like every other patient. The reason UK doctors don't treat the symptoms is merely out of prejudice. This was a recognised organic disease until the psych's and CDC got involved. It's outrageous.

It's worth looking at what Dr Dan Peterson and Dr Paul Cheney use with their patients. It wont be the same for every patient though. They are two of the most experienced doctors out there right now.

LC9 is spot on regarding the pacing. It is vital not to overdo things, when we run out of energy we create even more damage.. Always stop before you feel you must, so you have something left to fight the illness with.

I forgot this most important strategy in my last post .

The spoons theory www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ is a good explanation. It was written by a Lupus patient, but is just as true for CCC ME.

The spoon theory really makes sense.

I had not heard of XMRV before. Have you been tested for this or is it difficult to get a result on because it is hardly in the bloodstream as you mentioned?

Is there an actual diagnostic differences between M.E. and CFS or do some doctors just put it under the umbrella of CFS.

I find it really confusing, plus my concentration is awful at the moment so reading through documents can be difficult

Thanks

Lucertola, hi again. I have been tested for XMRV as part of the Whittemore Peterson Institute UK study, but I won't know the results until the study is published - before that my blood is labeled with a number, they won't unscramble the results until it's finished.

Reliable, affordable tests are not available yet - they say they may be by September. For the study, they are doing four different types of investigation, and that would not be economic for individuals to pay for.

I'm not surprised you are confused, the doctors are confused too, it is a lot to do with the deliberate muddying of the definitions by the CDC in the States, and the Wessely crowd here in the UK.

So the current state of play is that they put all chronic fatigue patients who have no abnormal test results (and remember, they do not allow the tests that would show ME) and have been ill for six months or more into the wastebasket diagnosis of CFS.

The difficulty in reading is classic ME trouble. I can read for fun now, but I couldn't for ages. I used to just stare at the page, unable to absorb the information.

It's a lot easier to read short paragraphs. If the page is just a continuous block of text, I still can't take it in. Sometimes, if I really want to read something, I have to cut and paste into Word, and add breaks myself.