Overlap between CFS and Depression?

[Bob]

I haven't read any depression literature, so I'm not familiar with the arguments for and against the HADS questionnaire.
But even in science (or especially in science) common sense needs to be used.
Common sense means to use common logic to assess a situation, to get the best result.

When my ME symptoms are at their worst, and I'm exhausted, with severe malaise, I will not answer positively to any of the HADS questions. But this has nothing to do with depression. I suppose it could be correct to say it's related to distress, for want of a better word, or physical stress.

When someone has a severe bout of flu, they would also answer negatively to all the HADS questions. But it's nothing to do with psychological depression. It's to do with the physical distress of feeling severely physically ill.

If someone is in severe pain, all the time, then it's not likely that they are going to feel 'cheerful' all the time. If someone is too exhausted to crawl to the toilet, or to make a sandwich, and is flat out on the sofa all day, then their 'appearance' is the last thing on their mind. If someone has been suffering from significant cognitive impairment for months on end, has a constant head ache, feels constantly cognitively ill-at-ease, and has partially lost their memory, has suddenly become disabled, and has lost their job and their social network, then perhaps they might struggle to 'laugh and see the funny side of things' very often. But that doesn't mean they are depressed. It just means there's not a lot to laugh about.

I cannot see how the HADS questionnaire can possibly distinguish between depression and the stresses and limitations of living with a severely incapacitating illness.

HADS:
I still enjoy the things I used to enjoy
I can laugh and see the funny side of things
I feel cheerful
I feel as if I am slowed down
I have lost interest in my appearance
I look forward with enjoyment to things
I can enjoy a good book or radio or TV programme

 

[Nielk]

In my opinion, one way to measure the validity of such questionnaires measuring depression in CFS patients is to compare them to matched group of patients suffering from a long severe debilitating disease.

If one were to send this questionnaire to 1,000 CFS sufferers who are disabled from work and suffer from chronic pain. Then send the same questionnaire to 1,000 disabled in constant pain patients from any disease. Compare the results of the two groups. We can't compare ME/CFS to normal controls. We just don't have the same life experiences nor do we have the same hopes for the future. That is just the reality of the disease. It has nothing to do with mood.

 

[Nielk]

Bob - I think our posts just crossed each other. We are basically saying the same thing in different words. Yours of course, much more eloquent. (as usual!)

 

[Bob]

In my opinion, one way to measure the validity of such questionnaires measuring depression in CFS patients is to compare them to matched group of patients suffering from a long severe debilitating disease.

If one were to send this questionnaire to 1,000 CFS sufferers who are disabled from work and suffer from chronic pain. Then send the same questionnaire to 1,000 disabled in constant pain patients from any disease. Compare the results of the two groups. We can't compare ME/CFS to normal controls. We just don't have the same life experiences nor do we have the same hopes for the future. That is just the reality of the disease. It has nothing to do with mood.

Bob - I think our posts just crossed each other. We are basically saying the same thing in different words. Yours of course, much more eloquent. (as usual!)

I prefer your post. Much more scientific, and succinct. And it's a good idea.

There's probably already some existing literature that's looked a HADS scores for other patient groups with similar levels of pain and disability etc.
Just a brief thought... If any of us decide to look for some literature... Perhaps untreated rheumatoid arthritis might have similar levels of pain, disability and distress?
But, then again, perhaps an illness with neurological symptoms might be more appropriate to compare.

 

[biophile]

I think Wessely did at least admit that he over-estimated the association of CFS with depression. But he still seems proud of his first study on this same issue, which by today's standards is significantly flawed and helped shaped (distorted) medical opinion of CFS for years to come because it resonated with pre-existing prejudices.

 

[EllenGB]

Peggy Sue. That's the problem: Hatred of all psychiatrists and things psych. Yet there are psychs who are aware and work according to a biomedical model and there are psychs with ME. Depression is subjective. There's no biologocal marker. Like the cortisol test for stress. You can see abnormalities, sometimes, but they are hard to interpret, e.g. low am levels doesn't mean that the levels are low during the whole day. It gives an idea but just an idea.

So disappointed at this anti-psychiatry hostility when not all psychs agree with the psychological explanation and it doesn't exactly encourage us to keep fighting. And rmember, it was a psych who really played a major role in getting ME better known amongst the general population and medical profession in the first place. We're not all the same. And non-psychs tend not to know enough psychology and psychiatry to challenge the fear avoidance model etc. Amen.

 

[EllenGB]

Bob. I did the whole analysis of depression a few years ago. HAd, BDI, SCID etc Published in the MEA magazine as well as elsewhere. No one has to reinvent the wheel. Also compared 50 patinets with ME with 50 people with MS and 50 control for Neuroticism. Also published, e.g. in 2009 article on ME with new guidelines and research. Online with update.

 

[Valentijn]

Just a brief thought... If any of us decide to look for some literature... Perhaps untreated rheumatoid arthritis might have similar levels of pain, disability and distress?

I'm not sure if it includes HADS, but the BPS bunch have used bad questionnaires on RA and MS patients the same way they do on ME/CFS patients. But then the conclusion isn't that they have a psychosomatic disease, but rather that their diseases inevitably cause psychological problems, and they should all be referred to the CBT practitioners to learn how to deny the relevant symptoms on questionnaires.

 

[Valentijn]

So disappointed at this anti-psychiatry hostility when not all psychs agree with the psychological explanation and it doesn't exactly encourage us to keep fighting. And rmember, it was a psych who really played a major role in getting ME better known amongst the general population and medical profession in the first place. We're not all the same. And non-psychs tend not to know enough psychology and psychiatry to challenge the fear avoidance model etc. Amen.

No one here has said anything that strikes me as being anti-psychiatry or hostile.

There are thousands of studies showing biomedical abnormalities, and many of them are of sufficient quality to be rather persuasive.

On the the other hand, there are a couple small groups of BPS researchers claiming that either ME/CFS is a psychological problem, or that we get it due to psychological problems, or that most of us have co-morbid psychological problems. But these claims are based on a bunch of very bad studies, which use very bad questionnaires (even worse than HADS) equating physical and cognitive symptoms to depression, anxiety, and psychosomatization.

I think the vast majority of us are not opposed to psychological or psychiatric disease, per se. On the contrary, we get similar poor treatment (often worse, since we're expected to cure ourselves), and as a result we are probably some of their biggest sympathizers. But there is simply no credible evidence that psychiatric problems play any role in ME/CFS, aside from what you'd expect due to our physical limitations and they way we are treated.

Furthermore, the vast majority of the time, psychiatry and psychology are extremely abusive toward us on an ongoing basis. They have done a great deal of harm by denying us proper medical care and subjecting us to treatments centered around brain-washing us into denying our illnesses, and convincing us to harm ourselves. People have been left physically and emotionally crippled as a result.

Hence I think if someone does have anti-psychiatry view, it is quite understandable how they acquired it, and it's rather nasty and uncalled for to be blaming the victims by calling them "hostile". If I want that sort of abuse, I'll go read a Wessely paper.

 

[EllenGB]

Bob, I don't know where you get that info from but it's hard to justify that. One can argue against the Chalder Fatigue scale, any VAS, and a lot of other questionnaires but of the instruments we have, the HAD is the best of that bunch. Interestingly, no patient with ME has had an issue with it after 30 plus years. Indeed, when we put studies together in my AFME days, they used to demand the HAD. It was the one anxiety/depression scale with a low irritancy factor. Prof. Scholey found an issue with the factors (three, not two), but if you look at the data on medical patients for whom the HAD was designed, the HAD does a decent job as a guide. You need to see scores coming down after treatment or that treatment isn't much use. I recall the breast cancer scores. Useful sometimes, to remind Wessely and co of those scores. The HAD isn't a problem. There are larger ones, notably the Chalder Fatigue Scale. Now in a fluctuating illness, how significant is feeling better compared to the past two weeks?

Note the 'everyone is ok with psych' claim and then, psychology and psychiatry have been extremely abusive to us generalisation. "He is disingenuous, and has used a variety of sophistic tactics to deflect attention from the public health crisis that m.e. represents. That he serves a corrupt short sighted medical bureaucracy, and is its tool as Esther points out, doesn't mean he's less culpable. What sort of doctor, who has any regard for his patients, would grandstand and spread the lie that m.e. patients are terrorists, even if he "disingenuously" qualifies it a small minority". I don't recall him referring to terrorists. and one can't deny there were cyberbullies. Court cases. What is writtena bout Wessely goes beyond the evidence. I diagree with almost everything he writes re ME but he does not have the influence attributed to him sometimes. Surely the problem is the fear-avoidance model? It's psychological and deeply flawed but adhered to and promoted by people who are not psychs e.g. Dr Miller at AFME. He certainly hasn't challneged it. There are psychs writing lots of articles challneging the fear-avoidance model. Profs Friedberg, Jason and me for starters. Reality is that the fear-avoidance model is accepted by a lot of anti-psychs. Many decision makers. I once wrote to Prof Komaroff, whom I took to be a sympathetic and competent physician and noted his recommendation re graded activity ( he advised it as part of management). I don't think it's always appropriate.Komaroff isn't a psych. Miller isn't a psych.

All those biological abnormalities mean litle as they are also found in psychological disorders. there are a few exceptions: Costa et al, replicated by Tirelli? et al and consistent with Hyde (see his book), Sorensen, White et al 2004 (effect of minimal exertion on immune system: a real suprise), Lane et al 1995 BMJ, Innes 1970 (Lancet), Paul et al 1999 come to mind. I've got a few more in the ME criteria paper. (Foodsmatter have it on their site).

People change their minds and I hope Komaroff has. I certainly haven't seen any refs to graded activity in more recent papers. The limited range of views is not just evident amongst psychiatrists. It's everywhere. Anyway, I really must stick to my word but Neil will hopefuly see that I tried. And failed. Dr Phil he say, 'do what works'. My attempts to inform aren't workign so I'll go back to the ME community which is calmer. Even when it comes to psychs.

Having issues with webiste and Java. Sorry for typos etc.

 

[Bob]

So disappointed at this anti-psychiatry hostility when not all psychs agree with the psychological explanation and it doesn't exactly encourage us to keep fighting. And rmember, it was a psych who really played a major role in getting ME better known amongst the general population and medical profession in the first place. We're not all the same. And non-psychs tend not to know enough psychology and psychiatry to challenge the fear avoidance model etc. Amen.

Hi Ellen,
I think that many people on this forum might not know your background.
Please don't interpret this as rudeness, but I'm afraid that I know nothing about you at all, and I am not familiar with any of your research.
So perhaps it might be a good idea for you to approach this forum afresh, and provide some background when you post your comments? This might avoid confusion.

For example, I was also not aware that you have a professional psychiatric background (if that's what your quoted post indicates), and I suspect that very few others on the forum did either.

So, when discussing 'psychiatrists' etc. on this thread, people were not directing any comments towards you personally.
I'm confident that no comments on this thread have been directed at you personally, and any comments about 'psychiatrists' etc, should not be interpreted as hostility against you personally.

Members of this forum often generalise about 'psychiatrists', and I often refer to the 'psychiatric-lobby'. But we don't mean psychiatrists in general. Our comments have to be interpreted in the context in which they are meant: We are referring to members of the cognitive-behavioural school of thought for CFS, which promotes the cognitive-behavioural model of illness. (i.e. CFS is caused by fear-avoidance-deconditioning etc.)

Of course not all psychiatrists are the same, and I think we should all be very careful to distinguish exactly what we mean when we make disparaging comments about psychiatrists.

Bob

 

[Bob]

I'm not sure if it includes HADS, but the BPS bunch have used bad questionnaires on RA and MS patients the same way they do on ME/CFS patients. But then the conclusion isn't that they have a psychosomatic disease, but rather that their diseases inevitably cause psychological problems, and they should all be referred to the CBT practitioners to learn how to deny the relevant symptoms on questionnaires.

If those studies show that depression rates are similar for CFS/ME and RA & MS etc, then perhaps they'd be useful comparisons to make, when rebutting the cognitive-behavioural model of CFS.

 

[Bob]

Bob. I did the whole analysis of depression a few years ago. HAd, BDI, SCID etc Published in the MEA magazine as well as elsewhere. No one has to reinvent the wheel. Also compared 50 patinets with ME with 50 people with MS and 50 control for Neuroticism. Also published, e.g. in 2009 article on ME with new guidelines and research. Online with update.

If you can provide links, that would be appreciated. I don't even know your surname, so I can't search for your work.

 

[EllenGB]

Dear Bob,

Appreciate the post.

I don't have a psychiatric background. I have a medical one (gynaecology/endocrinology) as well as degrees in health and clinical psychology. the latter are a result of my illness. Couldn't pursue a degree in medicine. Too ill. By 9.30 I was wacked. Spend more time in medical field even after psych courses, e.g. studied how women ovulate in the 70s. No psychology involved.

I am not impressed with the standard of psychology and have been working to raising it. Not impressed with standard in psychiatry either. Too much subjectivity and bias for my liking. Came across the psychologisation in medicine in the 70s and began to research that. This ended up in an article in the Psycholgoist in 1991, with fellow ME patient Robin Gadd. I observed and argued that ME is the most psychologised illness in the world today. I examined why. One reason why I was elected fellow of the BPS. Am also one of the few psychologists who is also a fellow of the RSM. (All that measuring of oestradiol and progesterone?)

I wrote a piece introducing myself on the forum.

I was fired by the editor of the Lancet when I wouldn't go along with the psychiatric explanation of CFS. Still have no idea why he is so biased but he and editor of BMJ are. that has caused a great dela of damage. Misinformed readers.

Personally, having worked for years as an archivist, I still am drawn to the persistent infection theory. Think what Chia and Chia found is significant. Ticks a lot of boxes.

Am traditional scientist and do some examining work now. As well as refereeing. Get invited for things but too ill to go.
When I feel depressed, I either put on the Killers, or do a medical module on BMJ Learning (wrote exam questions for the MRCPsych exams for them.) Passing cheers me up. (I don't do the psych modules. Something like a cancer or gynae topic). I know standards for research in oncology etc and they are much higher than for psychiatry. One can only write to the authorities and address this. But that isn't the sole reason for the mess. We have group think in NICE, at the MRC, BACME and other important bodies. All I can do is to make people aware. Scientists should not do group think. They should be critical and focus on quality evidence. In the CFS world, a few do but many don't.

Anyway, if it wasn't for ME, I might have had a PhD in gynaecology. Yes, I have psych qualifications (all the ones you can have) but it's a touch misleading. My passion lies elsewhere.

Keyboard keeps making letters disappear and sometimes I get a message about java. ie closes. Keyboard or ie don't like this forum.

I can live with psych lobby. Good compromise. I refer to the CBT fanclub. All the psychologisaiton drives me quite dotty. Where are the Killers....

Again, thanks Bob.

 

[peggy-sue]

FWIW, I'm a psychologist, I have an Hons. BSc. Which is how I know it's not any form of science.
And I have every respect for most psychiatrists, I'm particularly fond of Peter Rice, who helped me off the booze.

I thought it was R.D.Laing who promoted of the anti-psychiatry movement!

 

[EllenGB]

• A few links. Bet you wished you hadn't asked. These are for papers and the odd letter. Some links might not work anymore as pages move or journals combine with others. Some submitted papers need to be reviewed and guess what, too ill. Recommend the foodsmatter one for the ideas and refs.
• Goudsmit, E and Stouten, B. Chronic fatigue syndrome: editorial bias in the British Medical Journal. Journal of Chronic Fatigue Syndrome, 2004, 12, 4, 47-59.
• http://www.axfordsabode.org.uk/ME/JCFS.pdf
• Goudsmit, EM and Howes, S. Pacing: A strategy to improve energy management in chronic fatigue syndrome. Health Psychology Update, 2008, 17, 1, 46-52. http://www.health-psychology.org.uk/HPUContent/contents2008.php
• Goudsmit, EM., Stouten, B and Howes, S. Fatigue in myalgic encephalomyelitis. Bulletin of the IACFS/ME, 2008, 16, 3, 3-10. http://www.iacfsme.org/BULLETINFALL2008/Fall08GoudsmitFatigueinMyalgicEnceph/tabid/292/Default.aspx
• Goudsmit, EM and Howes, S. Is multiple chemical sensitivity a result of expectations and beliefs? A critical evaluation of provocation studies. Journal of Nutritional & Environmental Medicine, 2008, 17, 3, 195-211. (Personally, probably the best paper I've written). http://www.informaworld.com/smpp/content~content=a903527516~db=all~order=page
• Goudsmit, EM., Stouten, B and Howes, S. Illness intrusiveness in myalgic encephalomyelitis. An exploratory study. Journal of Health Psychology. 2009, 14, 2, 215-221. http://hpq.sagepub.com/cgi/content/abstract/14/2/215?etoc(On severity of ME compared to other diseases and disorders.)
• Goudsmit, EM, Shepherd, C., Dancey, CP and Howes, S. ME: Chronic fatigue syndrome or a distinct clinical entity? Health Psychology Update, 2009, 18, 1, 26-33. http://www.bpsshop.org.uk/Health-Psychology-Update-Vol-18-No-1-2009-P797.aspx
  Translated into Dutch and published in Lees Me, 2010, 10, 4-47.
• 2010 update: http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-clinical%20entity-10-12.html
• Goudsmit, EM., Ho-Yen, DO and Dancey, CP. Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome. Patient Education and Counselling. 2009, 77, 231-236. doi:10.1016/j.pec.2009.05.015.
• Stouten, B and Goudsmit, EM. How valid is the model behind cognitive behaviour therapy for chronic fatigue syndrome? An evaluation of the additional data from the trial by Prins et al. Bulletin of the IACFS/ME, 2010, 18, 2, 82-89.http://www.iacfsme.org/BulletinArchives/tabid/309/Default.aspxhttp://www.iacfsme.org/BULLETINSUMMER2010/tabid/432/Default.aspx
• Howes, A Goudsmit, EM., Crawford, JS and Dancey, CP. Graded exercise therapy for chronic fatigue syndrome: A systematic review. Submitted but needs tweaking.
• Goudsmit, EM., Jason, LA, Nijs, J and Wallman, KE. Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: A consensus document. Disability and Rehabilitation, 2012, 34, 13, 1140-1147. Online 19th December. doi: 10.3109/09638288.2011.635746. http://informahealthcare.com/toc/dre/currenthttp://informahealthcare.com/eprint/WR4UbuPGmi7XIIV4Ntpq/full
• PDF plus: http://informahealthcare.com/eprint/WR4UbuPGmi7XIIV4Ntpq/full
  
  
• Letters etc.
• Goudsmit, EM, Sneddon, P., Shepherd, C and Howes, S. Neuroticism as a consequence of illness. BMJ rapid responses, 2008, 26th February.
• http://www.bmj.com/cgi/eletters/333/7568/575#191151
• Goudsmit, EM. Ignorance is not bliss. British Journal of Psychiatry, 2009. eLetter Online 22ndOctober. http://bjp.rcpsych.org/cgi/eletters/195/4/369-a
• Goudsmit, EM. Study demonstrates that the criteria for CFS remain too vague. BMC Medicine, 2009, 20th November [Epub].
  http://www.biomedcentral.com/1741-7015/7/57/comments#374647
• Kindlon, T and Goudsmit, EM. Graded exercise for CFS: Too soon to dismiss reports of adverse reactions. Response to Letter to the Editor by Lucy V. Clark and Peter D. White. Journal of Rehabilitation Medicine, 2010, 42, 184. http://jrm.medicaljournals.se/files/pdf/preview/1233.pdf
• Stouten, B and Goudsmit, EM. Why use cognitive behaviour therapy to reduce fatigue in patients with chronic fatigue syndrome? The role of self-efficacy. Research letter. Psychological Medicine. Accepted 2010. Retracted by us in light of libellous response. Published Bulletin of the IACFS/ME (see articles above).
• Stouten, B, Goudsmit, EM and Riley, NH. The PACE trial in chronic fatigue syndrome. Lancet, 2011, 377, 1832-1833. Online 17th May. doi:10.1016/S0140-6736(11)60685-5 http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60685-5/fulltext
• Happy reading. (Makes a change from the fear-avoidance model).

 

[Iquitos]

"All those biological abnormalities mean litle as they are also found in psychological disorders."

Nonsense!

Punctate lesions in the brain have been found in MECFS since the 1980s. If found in "psychological disorders" the patient should be referred to a neurologist, not a psychologist.

Klimas found 300-some odd proteins in the spinal fluid of MECFS patients, not found in healthy normals nor in MS.

The Lights' research on how patients with MECFS have different chemistry after exercise, different from those with depression or any other "psychological disorder" shows, again, just how wrong you are to assume that "all those biological abnormalities are also found in psychological disorders."

The research on immune system differences is also very plainly indicative that biological abnormalities are VERY different in MECFS as compared with psychological disorders.

And the recent changes to the DSM, where 50% of the psychiatric community voted to classify MECFS as psychosomatic or medically unexplained show that we patients have, at best, a 50/50 chance of being viewed as hypochondriacs or malingerers by psychiatry.

Yes, I'm very hostile to that 50%. As Dr. DeMierleir has said, they have committed crimes against humanity. Shrinks are still having people committed to mental hospitals in UK and other places. Children are still being taken away from their parents because of psychiatrists claiming the parents are wrong and the children with MECFS are just trying to avoid school.

I hope you have watched Voices From the Shadows, the documentary produced by the family of Sofia Mizra who was essentially killed by psychiatry. Her autopsy showed spinal gangliotis and her death was attributed to ME, despite the psychiatric diagnosis that had the police break down her door and take her away. There are ME patients in mental hospitals right now, suffering the loss of their human rights and having psychotropic drugs forced upon them, thanks to psychiatry. Wessely is one of the people most responsible for that. This is not happening to people with MS, Parkinson's or other types of brain damage.

"All those biological abnormalities mean litle as they are also found in psychological disorders." is really, really offensive!

It's those biological abnormalities that should have been taken into account over the last three decades but have been countered constantly by a very noisy and influential group: psychiatrists and psychologists. I believe greed for money and power is their motivation. Wessely has been representing the insurance industry's interests for decades. What do you think of his statement that "researchers had rather go over Niagara Falls in a barrel than do cfs research"? It insults bona fide MECFS researchers at the same as it trivialized the biological illness itself.

What do you think of his statement that he has left that research field but that he is still coming out with papers that seek to trivialize patients and misinform anyone he can? That he has been recorded saying he would feel safer going to Afghanistan (where there are terrorist bombings daily) than speaking to a group of MECFS patients?

So I'd advise you not to try to "educate" the patient population but rather to educate your peers and do what you can to stop the damage they are still doing to this patient population. That damage extends through the medical community and the insurance and disability structures. It's extremely widespread and extremely damaging, therefore extremely offensive. Wessely style psychiatry is hurting, sometimes even killing, MECFS patients at this very moment.

 

[Bob]

EllenGB, thanks for your background, and the weblinks. I did see your introduction, but it didn't explain everything.

If internet explorer is crashing, try installing Firefox or Google Chrome?

Or if Java is crashing, then try uninstalling it. I don't appear to have Java installed, so I don't think it's essential. If you find that you need it, then you can reinstall the latest version. (You might have an out of date version.)

 

[EllenGB]

Just googled stress and cytokines and saw a number of studies e.g. http://www.ncbi.nlm.nih.gov/pubmed/12693607

It's now so easy to check if an abnormality associated with CFS is also linked ot psychologicla factors. 2 minutes on google or less to avoid claiming things that are wrong. If you can post here, you can google.

 

[peggy-sue]

But how are we to know how reliable any "psychological factors" are?
That is a big problem. None are validated - not until there is a biological correlate with sufficient theoretical grounds to attribute causation.