Two-thirds of studies on 'psychosocial' treatments fail to declare conflicts of interest

[Hip]

Yeah, it's too bad other countries don't spend their own money doing the necessary research and policy development instead of just letting someone else to all the work and then grabbing the results for themselves. Maybe international policies would be better if everybody contributed equally. Multiple perspectives are almost always better than lazily relying on one person or group to come up with the answers.

I agree.

But in the case of researching for biochemical causes for mental or cognitive symptoms, I think the English-speaking Anglo-Saxon countries are, by their own cultural disposition, uniquely placed for this research.

When you compare the Anglo-Saxon mindset to the Continental European mindset, there are some fundamental differences. Continental Europeans live a bit more in the world of mind and emotion. Whereas Anglo-Saxon mindset is often more geared towards the physical, mechanical, "nuts and bolts" level of reality. We are nerdy or geeky, if you like, compared to Continental Europeans. Or in philosophical terms, Continental Europeans are idealists, whereas Anglo-Saxons are pragmatists.

This I think has repercussions when trying to understand any biochemical etiology of mental or cognitive symptoms. By their own philosophy, Continental Europeans will tend to be predisposed to thinking that mental symptoms or phenomena will have mental causes (in fact I often think that Wessely comes across as far more Continental than British).

For example, in France, even a disease like autism is still very often approached using Freudian ideas, which I don't think is going to get you very far in terms of uncovering the likely biochemical causes of autism.

Now I love the Continental outlook to life, so I am not knocking it. But I don't think Continental Europe is where you are going to find much advancement on ME/CFS research (the Nordic countries are perhaps an exception, since among Continental Europeans, they tend to be a bit more pragmatic — surviving the icy cold Nordic winters will make anyone more pragmatic!).

 

[Old Bones]

Yeah, it's too bad other countries don't spend their own money doing the necessary research and policy development instead of just letting someone else to all the work and then grabbing the results for themselves. Maybe international policies would be better if everybody contributed equally.

I totally agree. Here in Canada, research funding is abysmal. According to data posted on the Internet, for the 10 year period from 2002 to 2012, Canadian research funding for ME/CFS was equal to 6 cents per patient per year. Since then, according to Canadian Institute of Health figures, our illness received 52 cents average annual funding for a three-year total of $645,925, despite the fact that an estimated 411,500 Canadians are affected. So, next time you read of the millions/billions of dollars being spent to provide support for tens of thousands of refugees, including specialty medical clinics, be happy that our federal government has its priorities straight -- providing better medical care to newcomers than ME/CFS patients have received for years/decades. I've recently read that Canada requires at least 400 trained doctors to cover the unmet medical needs of our patient group.

 

[SOC]

Don't forget that the British worked with the CDC on the 1994 criteria.

Well that was a disaster waiting to happen from the very first moment.

 

[Hip]

I think I might have found more details about how the disability insurance industry managed (and continues to manage) to avoid making payouts to ME/CFS patients, by using the name CFS rather than myalgic encephalomyelitis. The following text extract explains the history:

In the 1980s, there were a series of cluster outbreaks throughout the United States of a disease that was probably Myalgic Encephalomyelitis (ME) - except that the name and diagnosis was not used in the US. First the outbreaks were labeled Chronic Epstein-Barr Virus (CEBV), because a lot of cases seemed to start with mono, but that theory was soon discarded by NIH's point man on EBV, Stephen Straus. He then began using the phrase "the chronic fatigue syndrome" to identify the outbreaks in internal memos in 1986.

CFS convened a committee in 1988 to rename and define CEBV. There were specialists at the meeting who insisted the outbreaks were really cases of ME, but neither Gary Holmes from CDC, nor Straus from NIH, paid any attention to that. ME is not mentioned in either the body or footnotes of the resulting article, which became known because it gave the first definition for CFS: Holmes (1988).

The name and concept CFS was thus thrown out to the world in 1988. At the time, WHO was on ICD-9 (the 9th revision), but was no longer making changes to ICD-9 because they were getting ready to roll out ICD-10. And ICD-10 was released to the world in 1992.

Since CFS was not in ICD-9, as long as the US continued to use it, they were free to place CFS wherever they wanted. The US uses a modification of ICD-9 called ICD-9-CM (for "clinical modification"). In 1997, the US placed CFS in 780.71, under "Symptoms, Signs, and Ill-Defined Syndromes" in ICD-9-CM. And there it has remained for almost 20 years.

In the meantime, the rest of the world was adopting ICD-10. By 2000, most were using it, including the UK.

Source: here

In the United States, ICD-10 (or more precisely the US version of it, ICD-10-CM) was not adopted until 1 October 2015.

So in the US, chronic fatigue syndrome (780.71) remained within the symptoms, signs, and ill-defined conditions (780-799) section of the ICD-9-CM until 1 October of this year, when the ICD-10-CM was finally officially adopted in the US.



In the new ICD-10-CM, CFS not longer exists as its own entity, but can be found under chronic fatigue, unspecified (R53.82), where chronic fatigue syndrome is listed as a synonym.

In the ICD-10-CM chronic fatigue syndrome — aka chronic fatigue, unspecified — is listed under the section: symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99).

In the Peter White video that @halcyon posted earlier, at timecode 5:40, White talks about this chronic fatigue, unspecified label, and says:

If you are more neutral, you don't know if it is physical or mental, and you want to use a more neutral term, you have got something that you can use in ICD-10, in the R chapter: chronic fatigue, unspecified, which helpfully includes chronic fatigue syndrome.

So clearly, even in its new placing in ICD-10, chronic fatigue syndrome — aka chronic fatigue, unspecified — may be considered a psychologically-caused disorder. Which I think from the disability insurance industry perspective, means that insurance companies can still refuse disability payments to CFS patients, on the grounds that their disease may be a mental disorder with a psychological cause.



So in summary: in the new ICD-10-CM just recently implemented in the US, the official label for chronic fatigue syndrome is now chronic fatigue, unspecified, and the placement of this label in the section symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified means that CFS can still be considered a mental disorder caused by psychological factors.

Which I think means that insurance companies can still refuse to provide disability payments to CFS patients, on the grounds that their condition may be mental.



By the way, a good tool for searching the ICD-9 and ICD-10 is HERE.

 

[halcyon]

So in summary: in the new ICD-10-CM just recently implemented in the US, the official label for chronic fatigue syndrome is now chronic fatigue, unspecified, and the placement of this label in the section symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified means that CFS can still be considered a mental disorder caused by psychological factors.

And this is why I can't fathom all this advocacy that took place getting the government to combine ME/CFS. Of course, HHS happily did this so they can sweep ME under the CFS rug and not take it seriously. Talk about shooting yourself in the foot. For whatever reason, CDC/NCHS thankfully didn't listen to these advocates and our ICD-10-CM ended up correct with ME still in the neurological chapter and exclusionary of CFS.

By the way, a good tool for searching the ICD-9 and ICD-10 is HERE.

I don't like this site (icd10data.com) because it adds clinical information from another source other than the ICD and doesn't make it clear that it did so. It's amusing because when you look up G93.3 it says excludes CFS but then they provide clinical information about CFS instead of ME. The ICD isn't supposed to contain any clinical information anyways, it's simply a classification of diseases.

The WHO ICD-10 can be searched here and you can download the US ICD-10-CM here.

 

[Hip]

@halcyon
I just wonder how the new SEID name and definition of ME/CFS might eventually get incorporated into the ICD-10-CM. I was greatly relieved that the authors of the Institute of Medicine (IOM) report on ME/CFS, who came up with the SEID name, did not appear to have any insurance industry or Wessely School influence. I think it was an inspired idea to prohibit any ME/CFS experts from getting involved in this IOM report, and my hunch is that this prohibition was specifically to prevent any insurance industry stooges or anyone else with ulterior motives from getting on the team and influencing the IOM report outcome.

I don't like this site (icd10data.com) because it adds clinical information from another source other than the ICD and doesn't make it clear that it did so. It's amusing because when you look up G93.3 it says excludes CFS but then they provide clinical information about CFS instead of ME. The ICD isn't supposed to contain any clinical information anyways, it's simply a classification of diseases.

The WHO ICD-10 can be searched here and you can download the US ICD-10-CM here.

OK, well that explains some of my confusion when using the icd10data.com site — because when I was searching for the same diseases on the WHO ICD-10, there was no clinical information.


Am I right in thinking that chronic fatigue syndrome / chronic fatigue unspecified does not exist in the international version of the ICD-10? Because in the international ICD-10, the entry for R53 does not have any chronic fatigue unspecified sub-entries like the same R53 entry does in the ICD-10-CM.

 

[halcyon]

I just wonder how the new SEID name and definition of ME/CFS might eventually get incorporated into the ICD-10-CM.

Given the tepid response to the new name by CFSAC, I'm not sure how far SEID is going to get. If it does end up in our ICD-10-CM (which it won't for a while as the 2016 version is already out) my guess is that it will also end up in the R section along with CFS. I don't see where else it could go.

I think it was an inspired idea to prohibit any ME/CFS experts from getting involved in this IOM report

I think you're confusing the IOM report with the P2P report. There were many CFS experts involved in the IOM process. I think what kept it safe was that the IOM is an independent organization, and so the CDC and NIH couldn't touch it.

Am I right in thinking that chronic fatigue syndrome / chronic fatigue unspecified does not exist in the international version of the ICD-10? Because in the international ICD-10, the entry for R53 does not have any chronic fatigue unspecified sub-entries like the same R53 entry does in the ICD-10-CM.

CFS as defined in the US does not exist in any of the tabular data in the WHO ICD-10. It only exists in the index and it points to ME at G93.3. This is a mistake that needs to be rectified. For whatever reason, the WHO seemed to assume that when we in the US said CFS we meant ME, but as you can clearly see from how we classify both in the ICD-10-CM now (as mutually exclusive), that is not the case. WHO should either remove CFS from the index and leave it out of the classification entirely, or if they want they should put it in their R section as we have since there really isn't anywhere else to put it as defined today.

 

[Hip]

I think you're confusing the IOM report with the P2P report. There were many CFS experts involved in the IOM process.

Ah, right. Not the first time I've got muddled up!

CFS as defined in the US does not exist in any of the tabular data in the WHO ICD-10. It only exists in the index and it points to ME at G93.3. This is a mistake that needs to be rectified. For whatever reason, the WHO seemed to assume that when we in the US said CFS we meant ME

Perhaps it is not a mistake, but deliberate and political. The WHO have never had much truck with the Wessely School or the notion that CFS is a psychologically-caused disease. They are strictly in the neurological camp when it comes to ME/CFS.

Some time ago, when Wessely was a major power player in the world of ME/CFS, he had his sights aimed at the WHO, and his plan was to take on the WHO, and try to get ME redefined as a psychologically-caused condition in the ICD. But the WHO told him to get lost:

Wessely was also recently reprimanded by the World Health Organization (WHO) for attempting to subvert the ICD definition of Myalgic Encephalomyelitis due to the fact that he did not, as he claimed, have the authority to issue a WHO definition.

Source: 1

So perhaps the ICD-10 international version pointing chronic fatigue syndrome to the myalgic encephalomyelitis entry is a couched statement by the WHO that they deplore the psychologization of ME/CFS.

 

[halcyon]

So perhaps the ICD-10 international version pointing chronic fatigue syndrome to the myalgic encephalomyelitis entry is a couched statement by the WHO that they deplore the psychologization of ME/CFS.

You can tell the BPS folks don't like it. In the video I posted above, after (incorrectly) stating that you could diagnose CFS as F48, Peter White just ends up saying to ignore the ICD-10 classifications entirely. They can't have it their way, so they just discard it.

 

[halcyon]

That can only happen in the UK though, as far as I know. And it might be a bit dodgy even there.

It shouldn't be possible in the UK either. WHO ICD-10 F48 excludes both G93.3 and R53, so no matter which way you classify it (WHO or US ICD style) Peter White is wrong.

 

[SOC]

It shouldn't be possible in the UK either. WHO ICD-10 F48 excludes both G93.3 and R53, so no matter which way you classify it (WHO or US ICD style) Peter White is wrong.

Since when did that ever stop him?

 

[Hip]

It kind of feels the ME/CFS patient community are now turning the tides in this long battle against the Wessely School. The Internet I think has played a huge role in this, allowing the housebound or bedbound to fight back.

However, unfortunately the underlying forces that created all our problems — ie the insurance industry and governments fretting about their huge social welfare budgets — are still there; and as multiple $billions are always at stake in this game, these underlying forces will be ever-present; so even when Wessely, White et al are gone, it's quite likley some other insurance industry-backed frontmen may come along to take their place.