Sickness compensation in individuals with the diagnosis Chronic Fatigue Syndrome (abstract)

[Dolphin]

Lots of flaws in this - I've a few things to do so will leave it to others for the moment

http://www.eumassstockholm.com/app/attendee/default.asp?ProjectId=3477&PageId=25759

http://www.eumassstockholm.com/app/Data/ProjectImages/3477/Abstract_Bok_v03.pdf


EUMASS CONGRESS 2014

Sickness compensation in individuals with the diagnosis Chronic Fatigue Syndrome

Gunnel Bagge Allwood (1)

(1) Swedish Social Insurance Agency, Sweden

Background

Individuals with the diagnosis Chronic Fatigue Syndrome (CFS) often have a prolonged absence from work due to illness.

It is of importance to expand the knowledge about CFS and what lies behind it.

Purpose

Firstly a study on the occurrences of sick leave, as well as sickness compensation (before or after thirty years old) in individuals with CFS, is presented.

Secondly a literature survey over studies of patients with CFS is presented.

Methods

807 individuals (53% women) given the diagnosis Chronic Fatigue Syndrome (ICD-10: G93.3) sometime between year 2004 and 2009 by hospitals were included.

The information was collected from: Swedish Social Insurance Agency, Statistics Sweden and the Swedish National Board of Health and Welfare.

The literary survey included studies regarding previous morbidity, lab tests and factors contributing to the maintenance of the symptoms.

Results

On 31 of December 2009, about a third of the cohort had sickness compensation (for people before or after thirty years old).

One-third of these had a mental disorder as their main diagnosis.

One sixth had musculoskeletal diseases and one sixth had neurological diseases (including the diagnosis G 93).

The individuals that were sick-listed had generally very long periods of sick-listing.

The literary survey showed that people with CFS have lab results similar to stressed people, but no immunological factors or demographical variables had impact on the outcome.

Moreover, several studies showed that many people with CFS have a previous history of mental illness.

Also, different cognitive attitudes or processes seem to impact the maintenance of
the symptoms in individuals with CFS, for example:

Negative feelings and an aversion to the expressed fatigue, the condition was seen as an illness, impossible to influence, focusing on the fatigue as well as negative and underestimation of the individuals’ own ability be active [1].

Treatment methods such as CBT and Exercise therapy have shown a positive effect [1], [2], [3], [4].

Conclusions

Sick-listing, as well as sickness compensation (for people before or after thirty years old) in the cohort was wide-spread.

The largest part of people with sickness compensation had psychological diagnoses.

Future research should evaluate the development of CFS-individuals from a social insurance point of view, as well as the outcome of treatment interventions.

References

1. Knoop, H., Prins, J.B., Moss-Morris, R., & Bleijenberg, G. (2010). The central role of cognitive processes in the perpetuation of chronic fatigue syndrome. Journal of Psychosomatic Research, 68, 489-94.

2. Edmonds, M., McGuire, H., & Price, J.R. (2010). Exercise therapy for chronic fatigue syndrome (Review). The Cochrane Library, Issue 6.

3. Price, J.R., Mitchell, E., Tidy, E., & Hunot, V. (2009). Cognitive behavior therapy for chronic fatigue syndrome in adults (Review). The Cochrane Library, Issue 2.

4. White, P. D., Goldsmith, K. A., Johnson, A. L., Potts, L., Walwyn, R., DeCesare, J. C., ...Sharpe, M. (2011). Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet, 377, 823-836.

 

[mango]

this makes me want to cry my eyes out seriously worrying! Bagge Allwood should know much much better by now! she attended a meeting with RME (the swedish ME patient organisation) a couple of weeks ago, and they presented her and other representatives from the Swedish Social Insurance Agency with lots of facts about ME, biomedical facts, info on current research etc. and this is what she still chose to present after that,...

 

[Gijs]

'Swedish Social Insurance Agency', bias, bias, bias.... this report is written by a very biased person

 

[Dolphin]

this makes me want to cry my eyes out seriously worrying! Bagge Allwood should know much much better by now! she attended a meeting with RME (the swedish ME patient organisation) a couple of weeks ago, and they presented her and other representatives from the Swedish Social Insurance Agency with lots of facts about ME, biomedical facts, info on current research etc. and this is what she still chose to present after that,...

For what it's worth: I imagine the abstract was submitted long before a couple of weeks ago.

 

[kristysmiles]

This just reminds me why I am studying to become a doctor. The more I read about medical research the more bias I find. I am at the point where I no longer trust doctors, because I've realized how incompetent they are through their 'hive' mentalities. Currently in a calc-based Physics class and I've realized how easy it is to fudge data just by labeling variables differently. On another note, I am taking suggestions on which field of study I should pursue to make the biggest impact in the medical field.

 

[Valentijn]

On another note, I am taking suggestions on which field of study I should pursue to make the biggest impact in the medical field.

We could always use more clinical ME/CFS specialists, willing to investigate and treat the issues of each patient on an individual basis. Though researchers are also extremely necessary, of course

But if picking a specific direction to lean in, neurology might be the most helpful. It's extremely hard for an ME patient to get anything other than abuse from neurologists, despite that we have neurological symptoms and WHO classifies ME as neurological. Though an autonomic focus could also be very useful, since we have tend to have a delayed onset of orthostatic hypotension (Neurally Mediated Hypotension), instead of the more common types which mainstream autonomic specialists look for.

 

[Esther12]

On another note, I am taking suggestions on which field of study I should pursue to make the biggest impact in the medical field.

If you want a difficult life, we could do with some really rigorous and sceptical psychiatrists. Possibly a risky choice for a career though.

 

[Dolphin]

Somebody sent me the following and said I could share it where it might be useful:


At a glance :


The Swedish Social Insurance Agency (FK) has been using a 2009 document* to justify all manner of abuse against individuals with ME/CFS.


(*Swedish language document: www.vardgivarguiden.se/global/01_behandlingsst%C3%B6d/3_fokusrapporter/fr_kroniskt_trotthetssyndrom_2009_webb.pdf



The 2014 document you shared lists four references in its discussion of CFS. One of those references is from 2009 but is not in the 2009 document. The other three are post-2009.


I imagine then that FK is looking to update the source material it uses in courts of law to deny individuals with ME/CFS access to insurance.



As a more general FYI - The Swedish ME Association (this is my translation – I’m not sure what the official English name is) recently shared a link to a short Swedish TV news segment which discussed a recent (maybe a judgment was given last week?) court case which favored individuals-with-ME/CFS’ fight for long-term disability insurance.


As I understand though, the video link is set to expire soon. Surely more info will be in writing somewhere – but I’m going to try to take notes in the coming days, just to make sure I have what info I can. I’m sure one of the Swedish posters understands far, far more than me. But I’m happy to share what I can.

 

[mango]

yes, there's something seriously seriously wrong with the Swedish Social Insurance Agency (FK) and how they deal with people with ME! i think so too, that FK is looking to update the source material it uses in courts of law to deny individuals with ME/CFS access to insurance. their decisions are very arbitrary, they are acting against their own rules and against the law, lying in court, forcing people to repeatedly take part in seriously harmful tests (causing serious life-long harm), having their hired incompetent consultants give ME-sufferers psych diagnoses on paper in addition to or instead of ME (somatisation disorders, hypochondria, depression, PTSD, anxiety, burn-out depression(?), ADD, ADHD etc), completely ignoring what the GPs and the specialists are saying/writing etc it's such a nightmare...
(having said that, as it is a very arbitrary system, some few people are lucky and have no problems at all.)

about the news segment: it has expired already, was only available for 7 days. i watched it and was very disappointed. the judgement hasn't been given yet. a bit of misleading info, unfortunately. no big news or anything, this woman is just one among many having to fight really hard for sickness compensation... having been denied over and over again.

there have been and still are lots and lots and lots of cases against FK in court here in Sweden, people who are forced to appeal over and over again year after year... i'm one of those people. FK keeps ignoring prejudices (is that the correct word?) from previous court cases, and they also ignore their own rules/legal guidelines, as well as research, what the doctors and medical experts are writing including international consensus etc

take me as an example. i've been ill since 2004, haven't been able to work at all since 2006, and am bed-bound since many years now. i have submitted really detailed and well written papers from my doctors over the years (including one of this country's best among very few me-specialists, a neurologist). however, i still keep being denied sickness compensation, because according to FK i "haven't been ill for a particularly long time" and "it's impossible to rule out that rehabilitation could fully restore my capacity to work". they claim - contrary to what the doctors have testified - that it's impossible to make a correct prognosis since "there is no scientific evidence regarding the diagnosis or its consequences." i've already tried cbt/get and of course only got much much worse, permanently it seems... FK doesn't say what kind of rehabilitation they have in mind, doesn't produce any documents to prove their claims, and totally ignores what the doctors are saying about there being none, pointing out the serious risks involved with over-exertion in me, that it would be unethical to have me go through more useless "rehab" experiments etc. i have the help of a great lawyer, but it doesn't matter how many judgements from other people's similar court cases are submitted, or how many scientific studies are referenced... FK just keeps ignoring it. i've appealed to the court, and am still waiting for their judgement... this particular case is an application i submitted in june 2012. i since have several more of them, all in different stages of the process... all of them keep getting denied in each instance

sadly, i'm just one of way too many people getting denied sickness compensation for various random untrue reasons. some win their appeals in court, but far from all the courts often don't question the info they get from FK/authorities, so their lies are often mistaken for facts, which of course affect the judgements

regarding the "fokusrapport" document that you linked, yeah... it's a terrible, awful one. it has done great harm and been harshly criticised by RME (The Swedish ME Association), and they have even gotten a politician involved in the issue to go on record to speak against it, admit that it needs to be reworked/updated (http://pestosilvestri.blogspot.se/2011/11/svar-pa-interpellation-om-mecfs.html). there are other swedish me-specialists who have raised their voices in similar issues, for example dr per julin whose criticism of the PACE trial can be found (in swedish) near the bottom of this page: http://www.rme.nu/node/72

here's a link to the RME statement/criticism on the above report (2009): http://www.rme.nu/stockholm/KommFokusKTS.pdf
it was picked up by the media as well http://www.mynewsdesk.com/se/mp_sto...ot-landstingets-fokusrapport-om-me-cfs-284651

sorry for the long post... i have sooo much to say on this subject, having suffered immensely on so many levels because of FK for the last 9 years... i actually got a letter today from the FK telling me that the appeal (review? "omprövning" in swedish) of my latest sickness compensation application (submitted in aug 2013) has been denied. so now i have to take this one to court too, to appeal. this means i'll have 4(?!) simultaneous FK cases that i have to try and juggle... even with the help of the lawyer it's way too much work for me, it simply isn't possible

(edited to fix spelling mistakes...)

 

[Dolphin]

Sorry to hear of your difficulties, mango. Best of luck.

 

[kristysmiles]

@Valentijn
I was thinking neurology, or infectious disease.

@Esther12
I'd consider Psychiatry, but I think they'd kick me out of their program when they find out I don't believe in physical manifests of a psychological cause.

 

[Strawberry]

@kristysmiles are you studying on Oahu? My daughter is transferring to UH Manoa in January for the medical school. She is studying bioengineering, I think her final career choice is micropathology, but knowing my brain I am probably wrong. Glad to hear you are studying for this area, I hope you are able to manage your symptoms well

 

[kristysmiles]

@Strawberry
I already finished my Bachelor's, but I need to finish my pre-med studies which I am doing on Oahu. I can't start medical school until I get out of the military unfortunately.

 

[Valentijn]

I'd consider Psychiatry, but I think they'd kick me out of their program when they find out I don't believe in physical manifests of a psychological cause.

The key to most degree programs is smiling and nodding when someone says something stupid, irrelevant, and/or wrong

 

[Snow Leopard]

The key to most degree programs is smiling and nodding when someone says something stupid, irrelevant, and/or wrong

*nods and smiles*

 

[Valentijn]

*nods and smiles*