The Fight is on...Imperial College XMRV Study

[flex]

""Think I kicked this one off by responding to Mithriel, saying that "exercise is stress". I'd like to abologise for my lack of clarity.

Stress is defined as anything the organism can't deal with.

Potential stressors include psychological ones as well as physical ones. Someone said they think they developed ME due to Judo for a long time at a high level. My own case combined IT project management with international level triathlon - no time for rest.""




fingers

Do you think that high level Judo and triathlons are condusive to someone who is starting to experience the symptoms of ME. MS patients probably wouldnt feel they could continue with such activities when their sypmtoms arose. Also why isnt the stress model roled out equally for MS, Cancer Aids etc. If it was true in one it would have to be true in another which would make the stress cause argument somewhat redundant.

 

[fresh_eyes]

Do you remember the South African Government trying to cover up the Aids epidemic, saying you could treat it with garlic and lemons.

I was thinking about this earlier - how did the WHO deal with Thabo Mbeki? Could be a good line of inquiry re how the international community might deal with infectious disease denialists in power.

 

[Dx Revision Watch]

Who is this Dr. M. White who wrote the comment to the Economist article?

CFIDS/ME = likely US
lawyers = likely US
brain SPECTS = rare in UK to order these under NHS

I would think US and might possibly be writing under a pen name.

If he is UK and it is not a pen name you can check on the GMC register. If he had left an email address I would have thanked him. I did not like the tone of the Economist article at all.

 

[Dx Revision Watch]

Wrong again

The code under the WHO expressely states that any illness can not be listed in terms of both a phsysical and psychological causual agent.

1) CFS is an umbrella term that includes mental illness. (E.g. OXFORD CFS Criteria). Used by Wessely/Sharpe/White/Chalder/ etc
2) CFS/ME is a dual coding description of two disease states (not allowed to dual code under the WHO), however it exists only in the UK.
There is no such thing as CFS/ME or ME/CFS as a disease state - precisely due to the dual coding issue that is prohibited.

Although I do understand CFS has a different meaning in the US.

I thought it might be useful to have an actual quote from WHO, Geneva,

...according to the taxonomic principles governing the Tenth Revision of the World Health Organization's International Statistical Classification of Diseases and Related Health Problems (ICD-10) it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive. The same principles will apply to ICD-11. Dr Robert Jakob, WHO Classifications, Terminology and Standards Team, Geneva


(Note the following applies to ICD-10 and not the codings currently proposed for the US Clinical Modification ICD-10-CM due for implementation in October 2013, which are different)

Currently, in ICD-10:

Benign myalgic encephalomyelitis is classified in Volume 1: The Tabular List in Chapter VI at G93.3 (and in Volume 3: The Alphabetical Index at G93.3)

http://www.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933

CHAPTER VI (CHAPTER 6)

Diseases of the nervous system (G00-G99)
Other disorders of the nervous system (G90-99)

Other disorders of brain

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis


(Note NOT "infectious diseases" but Other disorders of the nervous system > Other disorders of brain)


In ICD-10 (Note NOT the codings proposed for the US Clinical Modification ICD-10-CM due for implementation in October 2013, which are different) :

Chronic fatigue syndrome (note NOT "CFS" or "CFS/ME" or "ME/CFS" because WHO does not use these dual terms in its classificatory system)

is not included in Volume 1: The Tabular List.

It is currently indexed only in Volume 3: The Alphabetical Index.

It is indexed at G93.3 (the same code as for PVFS and Benign ME)

You can see it here:

Images of the entry for Chronic fatigue syndrome, WHO ICD-10

http://www.meactionuk.org.uk/G93-3-ICD-10-index.jpg
http://www.meactionuk.org.uk/G93-3-ICD-10-index-closeup.jpg

WHO HQ does not include definitions in ICD-10 for PVFS, ME or "Chronic fatigue syndrome". It is not known how it views the relationship between these three terms. This may or may not be clarified in ICD-11.

It is not yet known whether the WHO Topic Advisory Group for Neurology intends to propose that "Chronic fatigue syndrome" should be included in Chapter VI of Volume 1: The Tabular List in ICD-11. But since all volumes of ICD-11 will integrate with each other it seems unlikely to me that they would leave Chronic fatigue syndrome indexed in Volume 3 at G93.3 but not mapped across to Volume 2.

If Chronic fatigue syndrome were to be classified in Chapter VI at G93.3 in Volume 2, then it cannot also be classified in any other chapter - which includes Chapter V (Mental and Behavioural Disorders).

This has relevance for DSM-V and the "harmonization of ICD-11 Chapter V and DSM-V" issue.

Again, I am talking ICD-10 and ICD-11 NOT the US ICD-10-CM Clinical Modification.

So with reference to DSM-V, it is incorrect to say that

So instead of going from the Infectious Disease category, CFS is going from "somatoform disorder" to "somatic symptoms disorder"?

Because:

a) ME is NOT classified within DSM.
Chronic fatigue syndrome is NOT classified within DSM.

b) Neither ME or Chronic fatigue syndrome are classified in either ICD-10 or DSM under "Infectious Disease category"

c) DSM has NOT proposed that Chronic fatigue syndrome "...is going from "somatoform disorder" to "somatic symptoms disorder?"

d) DSM has NOT proposed classifying and coding specifically for Chronic fatigue syndrome or ME or FM or IBS.


What DSM has proposed so far (and this may have changed by the time the draft comes out) is the following:

To get rid of the term "medically unexplained" in order to

"...diminish the “dichotomy, inherent in the ‘Somatoform’ section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease.”

To rename the "Somatoform Disorders" category (possibly) “somatic symptom disorder”

To propose a framework that:

“…will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome.”

For example, by placing "general medical conditions" and the so-called "functional somatic syndromes (FSSs)" on one Axis BUT WITH THE ABILITY TO ALLOW AN ADDITIONAL DIAGNOSIS of "somatic symptom disorder" (or whatever they are thinking of calling it) to ALL disorders/diseases/conditions.

DSM SDD Work Group members (and many within the psychiatric profession) already refer to

CFS, FM, IBS, MCS, CI, CS and a number of others

under the umbrella term "functional somatic syndromes (FSSs)" - this is nothing new.

This proposal would have implications for all diseases/disorders but it is not the same as saying that DSM wants to classify CFS under "somatoform disorders" or "somatic symptoms disorder" or whatever.

Think of it like this:

Heart disease + the potential for an additional Dx of "somatic symptom disorder"
Diabetes + the potential for an additional Dx of "somatic symptom disorder"
MS + the potential for an additional Dx of "somatic symptom disorder"

CFS + the potential for an additional Dx of "somatic symptom disorder"
FM + the potential for an additional Dx of "somatic symptom disorder"

 

[DysautonomiaXMRV]

Thank a lot for that ME Agenda, you're a wonderful source of accurate information.

Just to confirm again from what you showed us....

''(ICD-10) it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive.''

This confirms my original statement that one cannot use the terms CFS/ME or ME/CFS for ME (Myalgic Encephalomyelitis). ME is coded: ICD-10 G93.3 - (Postviral fatigue syndrome & Benign myalgic encephalomyelitis).


Now regarding how the XMRV wasn't detected in the UK by Wessely and friends, we all know how and why so I won't repeat. However, I wonder if other people are aware outside of the UK that Wessely and colleagues also heavily influenced the NICE (National Institute for Clinical Excellence) Guidelines on CFS/ME? We can see here also, that the Wessely School control over patients with the label CFS or ME, not finding they are infected and told they are malingering , continues..............

2009 NICE GUIDELINES on CFS/ME from the Department of Health, United Kingdom.

''The following tests should not be done routinely''.

* Serology testing for chronic bacterial infections
* Serology for chronic virus infections: HIV, Hepatitis B and C.
* Serology for general viruses (for example, heterophile antibody
tests for infectious mononucleosis).
* Serology testing for latent infections: toxoplasma, EBV, CMV.
* Folate levels

Quite scandalous, yet entirely logical the Imperical College Study found what it did because the person who chose the patients blood to be tested - helps write the above.!

EBV, Mono and viruses are very common in ME and CFS - hence they say don't test for them! Importantly, this helps perpetuate the psychiatric myth of diseased patients with the label CFS. Low folate is also not uncommon and can lead to shortness of breath at the very least. A common complaint in ME patients and almost always put down to overbreathing, hyperventilation or anxiety. So blood tests are important, critically important and suggesting one should not test for infections and the like, is plain wrong in people who are very sick and vulnerable to infections!

For those outside of the UK, let me tell you that when something is not 'routine' then short of being on oxygen, having chest pain in A&E, or having significant hyper/hypotension then you will not get tested for viruses or infections. The 'state' pay for any tests (through public taxation of UK citizens), and disinterest in searching and probing for causation is enhanced, if guidelines recommend not to test. This is what guidelines are for, they are there to be followed.

The XMRV UK study is designed to fail, quite obviously from the evidence we have all scrutinised and analysed here so greatly over many pages.

We should all look forward to further quality research in 2010 from Dr Mikovits et al, Dr Kerr etc, the likes of what the SCIENCE paper put out originally, rather than what the Imperial College paid to have published.

 

[Tom]

What kind of medical support would you like? There isn't much doctors can do for your CFS as of now. I think CFS patients will be better off if they stopped relying on their doctors and start focusing on what works by adjusting their lives to the reality. At least till they find the cure.

I agree with this .
There are things that "work" that every individual owes it to themselves to try.
Pacing "works"
Avoidance "works"
When your whole body is overloaded with all kinds of crap and your brain is the same, why cause more problems/stress by adding more chemicals into the mix , trying to continue as normal when you can't,chasing around here and there searching for the "magic bullet".
Pay attention to those who are recovering ,forget about getting back to "normal", your body and brain may be damaged beyond total recovery that no drugs will fix.
If what is helping the recovererss costs no money what do you have to loose?
I'm off to walk a mile through the snow to enjoy a few beers and sit outside in the snow to drink and smoke cigarettes then walk back home.
I am recovering and improving day by day.

 

[DysautonomiaXMRV]

I'm off to walk a mile through the snow to enjoy a few beers and sit outside in the snow to drink and smoke cigarettes then walk back home.
I am recovering and improving day by day.

What a condescending attitude to have on a forum full of people housebound and bed ridden.
Some who are unable to even dress themselves, bath/shower/wash.

At worst it's a taunt, and and best it's totally unsympathetic, and disrespectful to the plight of people with an incurable immune disease that
devastates lives, and in some cases, can kill.

Very dissapointed to see such things written on a forum of this calibre.

 

[Mithriel]

I couldn't even get B12 injections and while I was in hospital a consultant stopped some of my medication without telling me, let alone talking it over with me or asking why I took it. Luckily I just kept on asking for it from my GP and he keeps on prescribing it for me.

What seems to be forgotten in this discussion of stress is that ME existed for decades before CFS and it came in EPIDEMICS. Later they found that sporadic cases occurred as well. Incline Village may well have been another epidemic of ME, but the CDC's CFS was a description of a general fatigue state which was very wide.

It may well turn out to be that XMRV leads to a single illness if the body is stressed or it may reactivate or enable viruses to take hold.

ME or EBV may turn out to be different things which lead to a similar fatigue state, but ME is VIRAL.

I was well, happy, healthy and on holiday on 29th July 1968, on 30th July 1968 I was in bed with an infection. "Game over" as they say.

Mithriel

 

[Mithriel]

Just seen the above posts.

It is good to hear of people who are improving, but it is very easy to fall into the trap of believing that those who don't get better or who get worse have done something wrong. It is a very instinctive reaction. We are bombarded with news stories of people who have recovered from cancer because of their positive attitude, or because they tried this herb and on and on.

Some people's bodies are just broken.

There are many sicker then I am, I am just grateful for the health I have, but I only manage to have some semblance of a life because of my medication. Without my painkillers I can't think for the pain, the other things I take stop my involuntary movements which prevented me doing anything for myself, even lifting food to my mouth.

I worry that if they decide to only allow certain drugs for CFS - a distinct possibility - I will loose access to these.

Mithriel

 

[JayS]

If he's in London then it would seem the helpful comments on this blog are by someone else. In which case this is not particularly helpful, but it's a good read if anyone has not seen it, and who knows, maybe it is the same guy.

http://cobbsblog.com/blog/?p=770

 

[Jenny]

Jenny you are extremely lucky. Since I first got glandular fever almost 9 years ago I haven't been prescribed a single thing for my ME on the nhs. Nada. Nothing. Zippo. Nyet. My gp has the attention span of a goldfish. Can you elaborate on what experimental treatments your gp has tried?

Hi Garcia - yes I have been lucky, but of course I'm still ill! So far I've taken care not to go anywhere near the NHS ME clinics, but I recently asked my GP to refer me to the Royal Free Fatigue (!) Clinic, as I thought it might be best to be one of their patients if the NHS ever offers tests for XMRV. I've got an appointment in Feb.

So to list some of the treatments I've be given by GPs:

1980s - One of the first things I read about was ephedrine. I showed him the research and he gave me a 3 week trial. I also asked him for a 3 month course of particular anti-depressant which I'd read about. Can't remember which. Then I asked for a Lyme test, which was negative, but he agreed to give me a month's trial of abx.
Later I started private acupuncture and Chinese herb treatment and as I got some benefit he referred some of his other ME patients to the acupuncturist.

A different GP (I'd moved away from the previous one) has recently helped me experiment with a wide range of different pain meds - I was on Celebrex for several months, which helped. He's also been prepared to try some of the Lyme abx treatments, but only for short periods of time.
And I get low dose amitriptylene from him for sleep on a long term basis.
This GP referred me to a haematologist at the Whittington hospital who has supported and advised me on methylation cycle treatments, and given me B12 injections for a few months.

I've also seen a lot of private docs and done various abx and supplement combinations with them.

 

[Jenny]

Hi Jenny,

What experimental drugs have you had access to? I live London and would love to compare notes?

Have you been able to have a full immune system workup (TH1/TH2,NK cells, Rnase L) and tests for common viri (EBV, CMV, HHV6 etc)?

If so, would you mind saying where they were done.

Hi Alice

See my reply to garcia. As I said, some of these were a long time ago, with drugs that no-one now thinks would help much anyway. But my current GP is willing to listen and has tried some things. I haven't had a full range of immune system blood tests, even at the Breakspear, but I have had TH1/TH2 done at the Whittington, and at the Royal Berks in Reading I had tests for EBV and CMV (but that was in the 80s).

None of these treatments have helped much, but I just wanted to make the point that there are docs in the UK who understand that this is a physical illness and are willing to listen to what you know about the illness and work with you.

 

[flex]

Jenny,
I hope you have a better experience of the Royal Free than I did. The neuro department their has an appauling attitude to "fatiqued" patients.

I was told that Neurologists dont diagnose ME. I distinctly saw them ignore all neurological signs of my neurological examination and misreport them to my GP.

They work very closlely with Simon Wessely.



On a seperate point there appear to be a number of other people coming on to this link with bizarre statements like " Im of to walk a mile through the snow" I am pleased people can do this. However this could be taken as quite a thoughtless comment by many including myself who not for the want of trying, is reliant on a mobility scooter just to experience the joys of the outdoor with my two young children. I cannot coordinate my legs and have very poor balance amongst suffering the terrible plight of post exercise fatique.

 

[Jenny]

Jenny,
I hope you have a better experience of the Royal Free than I did. The neuro department their has an appauling attitude to "fatiqued" patients.

I was told that Neurologists dont diagnose ME. I distinctly saw them ignore all neurological signs of my neurological examination and misreport them to my GP.

They work very closlely with Simon Wessely.


Hi flex - thanks for warning me. Part of the reason for going was that the doc who runs it asked the support group I help run what they wanted from the clinic, so I figured she may be willing to listen. We told her we wanted certain tests and support for experimental treatments. If I'm well enough to get there in Feb I'll make a big fuss if I'm palmed off with CBT or any other psychological treatments.

 

[Alice Band]

Jenny, I guess that it would depend on your expectations in a GP on how happy you would be. The drugs and tests you have had are very poor compared to seeing a private doctor or seeing a USA CFS. I am glad that you are being treated with respect, being listened to and that your GP is open to ideas. It's a postcode lottery which many of us have not won.

 

[dipic]

I agree with this .
There are things that "work" that every individual owes it to themselves to try.
Pacing "works"
Avoidance "works"
When your whole body is overloaded with all kinds of crap and your brain is the same, why cause more problems/stress by adding more chemicals into the mix , trying to continue as normal when you can't,chasing around here and there searching for the "magic bullet".
Pay attention to those who are recovering ,forget about getting back to "normal", your body and brain may be damaged beyond total recovery that no drugs will fix.
If what is helping the recovererss costs no money what do you have to loose?
I'm off to walk a mile through the snow to enjoy a few beers and sit outside in the snow to drink and smoke cigarettes then walk back home.
I am recovering and improving day by day.

That aside, I sure wish I could walk a mile. I have trouble walking 6 feet to the bathroom. Pacing doesn't work for me. Avoidance doesn't work. Simply being awake, something I can't control, is incredibly draining in and of itself. People like me who are in a constant, perpetual "crash" and are subsequently bedridden don't have much of a choice, unfortunately.

 

[Jenny]

Jenny, I guess that it would depend on your expectations in a GP on how happy you would be. The drugs and tests you have had are very poor compared to seeing a private doctor or seeing a USA CFS. I am glad that you are being treated with respect, being listened to and that your GP is open to ideas. It's a postcode lottery which many of us have not won.

Yes, some are poor drugs but I have been able to get abx, B12 injections and amitriptylene, all of which many people find helpful. I've got much more from various private docs and from complementary practitioners. GPs are even more restricted these days by gov guidelines esp in prescribing abx. I gather many in the US find it difficult to get much treatment too.

Only one doc (a pain clinic specialist) has ever recommended CBT. I did it, and of course it was useless, but the psychologist did tell me about the haematologist at the Whittington, and I wouldn't have known about him otherwise.

 

[flex]

Jenny

it looks like you are doing some great work. Keep us informed. I have to say that I only dealt with the neuro dept.
One of the neuros said to me quite abruptly " what diagnosis do you want" and " i dont care if you get these tests or not there are plenty other people waiting for them"

He refused me Furthur MRIs even though it had been advised by my referring Professor and said " Im not hear to order tests anyone can do that" Even though that is not true. My GP cannot order them and Im am having to pay for them privately out of my own pocket.

 

[fresh_eyes]

I think it's natural to congratulate oneself on improved health; it's the flip side of blaming oneself, and agonizing over the 'reason' for every crash. I'm also in the group who has sought little medical help and can now walk a mile and even sometimes work or spend time with friends (after 6 years, I'm now a 5-6 on Bell's scale), but honestly I don't know how much my self-management has to do with it. This thing seems to have its own cycles, and there's a lot of luck involved.

Plus I realize that if everyone took my approach, just getting on with life as best we can, the medical field would have no idea we existed, and no treatments, much less cures, would ever be developed. My $.02.

 

[Jenny]

Your experience with the neuros sounds awful flex.

I don't know what background the staff in the Royal Free Fatigue clinic have. The person who runs it is Gabriella Murphy.