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)

[Chocaholic73]

As the Mum of a DD 18 who has suffered greatly with severe ME over the last 3 years (as have the rest of the family) I am well aware of how horrendous this condition is and also the shortcomings of the healthcare available. I am not sure that your post (which I assume has been copied from somewhere) is really going to help improve knowledge of the situation or gain sympathy for those affected.

[clouty]

The post is my original work. We have to be aware of how it has been possible to hide a serious neuro-immune disease in a wider group, and only offer psychological treatment, which in the case of CCC ME can be positively harmful.

I have a friend, who got ME at the age of eight. 24 years ago. Four years ago he attended our local ME/CFS clinic, where they put him on a program of Graded Exercise Therapy and Cognitive Behaviour Therapy. Four years later he is still more ill than he was before the treatment.

This treatment is useful in the case of psychological illness, and my link to the Canadian Consensus Criteria will enable other mumsnet mums to understand the truth of their DD's and DS's condition. Unfortunately, most GP's use the Oxford or Revised CDC criteria, which do not give accurate diagnosis.

If I can save just one other person from a serious aggravation of symptoms, it will be worth it.

[clouty]

sorry, I left off the in memorium link. Here you go.
www.ncf-net.org/memorial.htm

[DBennett]

I'm not sure it's accurate to classify standard therapy as "only offering psychological treatment".

Standard therapy includes some (or all) of the following:

Cognitive Behavioural Therapy
Graded Exercise Therapy
Sleep hygene
Pacing
Management of co-morbid conditions (physcological or physical).

These are used because they are the ones that have been shown to work.

I also think it's right to be very sceptical of the claims some have made about XMLRV as it seems very much to be an un-repeatable finding in better quality studies.

Now those others studies (and the Groome recareated the methodolgy of the WPI study) found no link.

Likewise (in case it was a geographic variation) US studies have not been able to repeat the finding.

If XMLRV has a role in this condition, it would seem to be a minor and/or localised one.

[clouty]

The point is, who knows if you have a serious neuro-immune condition, when you are diagnosed with CFS? They do not do the tests.

With regard to the treatments on offer from the NHS, as you list above, they may well be useful for people with a Fatigue Syndrome of psychological origin, but they are dangerous for those with Myalgic Encephalomyelitis.

Check out this short video link www.whataboutme.biz/

With regard to DBennnet's assessment of the current research on ME/CFS and XMRV, with respect, you are wrong. Many people are mislead, which is not surprising, when Prof. Wesseley et al have the ear of the press, through the Royal Institution's Science and Media Centre. Any press question regarding ME/CFS to that body is referred to that group of ME deniers. For a physical disease.

The CDC recently published another negative study in Retrovirology. This linkwww.retrovirology.com/content/7/1/57/comments is to the comments on that study, demolishing both the methods used and the "CFS" patients chosen to include. None of the negative studies stand up to scrutiny, unlike the WPI study. There are many similar studies getting close to publication. There will shortly be absolutely no way to deny the reality of the toxicity to the human organism of XMRV.

[clouty]

Please note that in the original post, reference 11 should have been www.sayer.abel.co.uk/LP.html

[dinamum]

All I can comment on is Lightning Process and as your views on this are inaccurate, and completely wrong and you have not researched any of your facts I can not give your other comments credence.

[clouty]

dinamum, with respect, I have researched my facts for the past eighteen months. What is your beef with my links on the Lightning Process®?

[sharbie]

Awful illness and we all deserve to be treated
(better).Hopefully medical science will catch up one day soon.
I would quite like my life back.

Can I be a lone positive voice and say thank you for bringing this up on here.
I am not interested in gaining sympathy but understanding and awareness.

[dinamum]

You have not researched your facts into LP correctly

"to a positive thinking regime sold by a pyramid selling technique, and invented by Phil Parker"

LP is not a positive thinking regime and neither is it a pyramid selling technique.

How did you research LP to come to these inaccurate conclusions

[clouty]

Well, the process of the Lightning Process® is described in one of the links I gave: www.sayer.abel.co.uk/LP.html
"During the three sessions I was encouraged and persuaded to believe that there was nothing actually wrong with me and that I could 'coach' myself back to health. Phil told us that we were not really ill but had got trapped into a cycle of thinking and believing that we are ill which sustains itself. ie. if you concentrate on your symptoms all the time, then you're going to keep having them. You are instructed to stop thinking about your symptoms and to get on with "living the life you love". I was to think of myself as healthy and behave as if I was healthy, ignoring the symptoms and "getting on with it". I trusted in this advice and followed it completely, and as it turned out, to my severe detriment. My relapse was obviously caused by drastically overdoing it physically in the following five weeks.

As an example, on the first day, after our 3 hour morning session, Phil asked the five of us what we were going to do that afternoon. Predictably we all answered that we would be resting up in preparation for the next day's session. He said that was very dull considering there was so much to do in London. As a result, I changed my plan of spending the remainder of the day in my hotel resting and instead visited a tourist site in the afternoon. He asked us next day what we had done and, as I had been most ambitious in what I did, I was singled out and praised. One of the others had gone for a long walk and he was also commended for that. No account was taken of actually how fit or well enough we were to do these things

Phil told us our symptoms were not evidence of anything sinister, could be ignored and that we would not damage ourselves by following the technique. I was prepared to believe him because, mainly due to the inadequacy of diagnosis, treatment and care afforded to CFS/ME by the NHS, I did not have any evidence to the contrary. However, I have since had various tests done privately which show bacterial and parasitical infection in my blood, malfunctioning and deterioration at a cellular level, low cortisol levels, vitamin deficiencies and heavy metal toxicity - not exactly evidence of nothing being wrong with me physically. No amount of positive thinking and ignoring symptoms is going to wish away parasites, bacteria, vitamin deficiencies or mercury poisoning. It is ludicrous and highly irresponsible to suggest that it would."

I would call that a positive thinking technique, myself. I have heard other accounts that are similar to this.

Most Lightning Process® practitioners are graduates of the Process. They regularly tout for business on patient support forums. We are rather fed up with them.

Anything else?

[dinamum]

Aargh so you are just going on heresay and links on the internet. You have not looked at the science based evidence or experienced it yourself.

Not very accurate research then

For every negative story on the internet I expect I can match it with a positive one.

[PositiveAttitude]

My DD (16) has been severely affected by CFS/ME for the past 2 years.

We have been very happy with the medical staff, from being diagnosed by her GP on our very first visit, the excellent local paediatrician and Dr Esther Crawley.

YEs, there needs to be more awareness of this awful illness and how devastating it can be. (DD was unable to stand for 5 months, at times was unable to support her head enough to lift it off a pillow and needed spoon feeding and lifting out to the toilet etc. Not exactly dignified for a teenage girl! )
I am unsure that your stance on here is going to exactly help the cause, though.

[Chocaholic73]

Hear Hear Positive. I am well aware that certain members of the medical profession are still very ignorant about CFS/ME but that is not the case for all by any means. Like Positive's DD, my DD saw Dr Crawley (Dr Crawley visited us at home at a stage when my DD was bedbound and needed to be taken to the toilet). Through using serious pacing, she got to be able to walk around the house again. My DD has seen no one since Dr Crawley apart from the GP as once she was too old for paediatrics at 16 there were no 16-18 services in our area and the adult services wouldnt accept her. That is appalling imo. There are major shortcomings in health provision but I don't actually feel that medical science is advanced enough at the moment to help all that much and the available guidance is lacking purely for that reason. I cannot comment on the Lightening Process as my DD does not wish to do it. However, I know of cases where it has made a huge positive difference. My DD has been seeing a Perrin Technique practitioner for the past year and for her it is that that has made the difference. I think the key is that every case of ME is unique and what works for one does not work for another. That of course is why it is so difficult for those researching it to find a way forward.

[DBennett]

As I mentioned, The Groome study I linked to used the Fukada definition.
This was the same as the WPI study.

It was larger and the PCR analysis was better controlled and more sensitive.

It was unable to replicate the findings of the WPI.

As have other studies from across the world.

So again, if this retro-virus has a role it can only be minor/localised.

In addition I have concerns about you mention of the following:

"However, I have since had various tests done privately which show bacterial and parasitical infection in my blood, malfunctioning and deterioration at a cellular level, low cortisol levels, vitamin deficiencies and heavy metal toxicity."

This reads like a laundry list of diagnostic tests used by alternative practioners with something to sell.
I hope you have not been taken advantage of.

[LC9]

There has never been a published study on the Lightening Process.

The WPI used the Fukuda and Canadian criteria, not just the Fukuda. So the Groom study did not use the same criteria.

The Groom study used less controls than the science paper.

PCR was not better controlled or more sensitive. There was no evidence that that test could detect XMRV in humans. Also the sensitivity of the PCR is still not low enough.

The Groom study was not a replication study. As yet, no one has published a replication study.

There is a positive study about to be published by the NIH/FDA.

[clouty]

"This reads like a laundry list of diagnostic tests used by alternative practioners with something to sell. I hope you have not been taken advantage of."

That was a quote from this link - www.sayer.abel.co.uk/LP.html and not my personal experience. I'm not that bad, because of the supplements and herbal anti-virals I take I can get out to the shops, once a week or so. Thank heaven for internet shopping!

About three months ago, I thought "why am I taking all these pills?" - I never used to take anything, before I got ME - and I stopped the lot. Ouch that was a bad move. I then re-introduced things, one at a time, and I found that they really were what was making the difference between being stuck in bed all day, just managing to feed myself, and having a life.

Doctors and specialists I have seen have belittled my experience, because of the current received wisdom about this disease, and I am by no means alone in having met with disbelief and difficulty, just trying to get the help I need.

"As I mentioned, The Groome study I linked to used the Fukada definition. This was the same as the WPI study. It was larger and the PCR analysis was better controlled and more sensitive."

The WPI study used both Fukuda and Canadian Consensus Criteria. Dr Judy Mikovits, leader of the WPInstitute.org Science study, explained why the Groome study and others found different results here:
"Why are reports of negative PCR studies occurring? The first possibility is that like HTLV-1, and unlike HIV-1, the worldwide distribution of XMRV is low, particularly in Europe, and that chronic disease such as CFS may have varied environmental triggers in different parts of the world. In our subsequent work since the publication of the Science paper, we have found XMRV in persons from around the world and we think this explanation is unlikely.

A second possibility is that there is more sequence diversity in XMRV than previously reported. That is, because of strain differences, PCR detection will occur only if the primer sequences employed are correct for that particular strain. However, PCR sequences generally are from conserved regions of the viral genome, so this explanation may also be unlikely.

The replication rate for XMRV could be very low and/or the levels could fluctuate in a given individual over time. This explanation may apply for individuals, but would be unlikely to apply to large numbers as the three negative studies have used. However, if any of the last three are true, single round PCR of genomic DNA isolated from PBMCs, using primers based on published sequences from using highly specific PCR based on the sequence of a single molecular clone, (VP62) might not result in the amplification of XMRV, even from an infected individual.

A fourth explanation is that peripheral blood mononuclear cells might not be the main reservoir for the virus. It should be noted that early in HIV infection, PCR of peripheral blood mononuclear cells will not detect the virus, as the reservoir is in macrophages. It is only later that CD4 cells become infected and PCR of peripheral blood becomes positive. From in vitro studies we are aware of tropism of XMRV, however no full investigation of in vivo tropism has been carried out to date. There are other possible explanations for the disparity of results between the Lombardi et al study and the PCR-only studies which are currently being explored.

However, despite the current assumption that PCR answers all questions, there are serious flaws in this assumption, and PCR-only papers are rarely published without supporting data. For this reason, the Science paper employed several other biologic technologies in asserting that XMRV is an infectious retrovirus, and a human pathogen linked to persons with CFS. It should be noted that the question of XMRV "causing" CFS was never discussed in the Science paper.

Because of these issues, we will describe below the methods we and other investigators currently use to reproducibly detect XMRV. Because we wish to accurately share technical information, the following will be quite technical, and possibly difficult for clinicians. Again we would like to offer any assistance we might be able to give in discussing these methods."

You can read the full text of this letter here www.iacfsme.org/BULLETINSPRING2010/Spring2010MikovitsLetter/tabid/427/Default.aspx

"Aargh so you are just going on heresay and links on the internet. "
The internet is merely a means of communication. Both true things and false things are published on the web. As always it is up to the individual to weigh the import of a variety of information, and make up their own minds.

There are 30,000 severely affected children in the UK. This is a scandal.

[dinamum]

So you are helped by medication that has not been recognised by the medical profession and has no scientific evidence yet are prepared to critise LP which has helped thousdands of people get well. Interesting.

I do agree that ME is a difficult illness to diagnose and the medical profession has limited treatment and may medical professionals have very limited knowledge of this crippling illness. The people who suffer are those with this awful illness

However I do feel that we have to be careful how we put across our anxieties with treatment methods and the causes. We have no choice than to work with the medical profession and educate them rather than alienate them.

[LC9]

Here is a quote from those that conducted the positive study:

"We contend that the three recently published negative PCR studies (13?15) do not qualify as being studies that fail to replicate our study, as neither the same PCR methodologies were used nor did these studies draw on the additional cell culture and immunological methods that we employed to observe XMRV nucleic acids and proteins."

[LC9]

dinamum

Which medication are you referring to?

[dinamum]

LC9 Quote from Clouty "I'm not that bad, because of the supplements and herbal anti-virals I take I can get out to the shops"

[LC9]

There are many supplements and anti-virals that have been recognised by the medical profession, and have scientific evidence. Mostly in the USA. It is a mystery why the NHS continues to ignore this.

On the other hand, the LP has never been studied, and there is currently no study being undertaken into the LP.

Phil Parker, claims 85% of people who do the LP recover their health in 3 days. Clearly this is untrue, as no study has been undertaken.

Mr Parker, expands this unproven claim, and says that, if 85% recover, and 67% of CFS patients have XMRV, then LP must be assisting these people deal with that infection. This is unscientific nonsense.

[clouty]

"..once a week or so"
My GP prescribed me Ibruprofen 600mg, that's a heck of a lot more dangerous than Cat's Claw and Allicin, and the Ibruprofen ripped a hole in my stomach - at least, thats what it felt like, the one time I took one. I returned those tablets to the pharmacy.

Would you rather I was bed-bound? People with CCC ME have no choice, unless they can afford to go to the few private doctors who actually treat the symptoms, than to work out for themselves what works and what does not.

The Lighting Process® does help people, some people, who need motivation and are not suffering from organic disease. But it cannot cure cancer, or Myalgic Encephalomyelitis, whatever Phil Parker et al may claim.

How can they claim a greater than 90% success rate? Here's another quote from that link www.sayer.abel.co.uk/LP.html

"The majority of comments written about LP on the web are overwhelmingly positive, which I find surprising and suspicious. I do not believe that I am the only person that it hasn't worked for. I did find several forums that were discussing it, with both negative and positive comments on it; however, all these discussions had been closed down, which I find curious.

Part of the training programme was telling you that if it didn't work, then it was entirely your fault for not doing the process properly or for not really wanting to get well (!!) and I think I may have been influenced in that respect into thinking it was somehow my fault that it hadn't worked. I was severely disappointed that the Lightning Process hadn't worked for me, and when I realised it had actually harmed my health as well, then I did actually try to forget about it for a while whilst I tried to regain a tolerable level of health again.

It has taken a considerable length of time for me to realise that in no way was I to blame for the fact that the LP didn't cure me and in fact made me more ill. I suspect there may be many others like me, who are unable to admit that it didn't work for them, either because they are too ill, too embarrassed or still brainwashed into believing that it's their fault that it didn't work."

[thumbwitch]

Interesting information, thanks.

[sharbie]

brainwashing is about right imo.

if the lp was a cure for 85% of 250,00 ill patients in the uk alone, then the people behind lp would at the very least be nominated for a nobel prize and it would be on the NHS available for everyone.