Why few dare tackle the psychology of ME

[Bob]

Nice Guidelines Blog - interesting blog entry, in response to Max Pemberton

Thanks to Max Pemberton for highlighting significant neuroanatomical brain changes in ME/CFS which proves yet again that ME/CFS is a physical disease
Friday, October 5, 2012
http://niceguidelines.blogspot.co.uk/2012/10/thanks-to-max-pemberton-for.html


The blog links to this study:

Regional grey and white matter volumetric changes in myalgic encephalomyelitis (chronic fatigue syndrome): a voxel‐based morphometry 3‐T MRI study
B K Puri et al.
British Journal of Radiology (2011)
November 29, 2011
doi: 10.1259/bjr/93889091

Conclusion: These data support the hypothesis that significant neuroanatomical changes occur in CFS, and are consistent with the complaint of impaired memory that is common in this illness...

http://bjr.birjournals.org/content/early/2011/11/29/bjr.93889091.abstract?mid=54032

 

[alex3619]

Bob: Or we have the corollary: if these mental illnesses have similar brain abnormalities, then they are neurological not psychiatric!

 

[Bob]

Bob: Or we have the corollary: if these mental illnesses have similar brain abnormalities, then they are neurological not psychiatric!

Yes, good point alex. It's my firm belief that most psychiatric illnesses are causes by immunological problems or inflammation with unknown causes. Obviously, schizophrenia and bipolar, for example, do not have psychological origins, but are neurological illnesses. So it's disingenuous to dismiss brain abnormalities, as if they do not indicate neurological problems. I don't know the details about which psychiatric illnesses have demonstrable brain abnormalities. I'm not sure how accurate the niceguidelines blog is.

 

[In Vitro Infidelium]

Right and how are you personally moving towards this goal?
If there is one thing that is clear from discussions like this: It is easy to criticise, it is easy to propose general solutions, it is difficult to start achieving those goals. Doubly so if you have limited energy to purse them.

Sounds like you are expecting me to leap into action -30 years too late for that I'm afraid. I'm afraid my observations and consequent distrust of 'elements in the community' informs my extreme reticence to disscuss on an internet forum, even under a pseudonym, anything I might do in the real world.

I'm not aware of any fundamental problem of engaging with the established organisations - the relevance of making my point on this forum is that its contributors include many who are disatisfied with the performance of those organisations - I was offering a suggestion about how a 'collective' of outsiders might usefully seek to influence the organisations they feel are not meeting the rightful demands of patients. And as far as criticism - that comes in train of notions of community and representation. In the end I'd prefer folks to desist rather than go on doing things that have only negative impacts - and arguing for someone to stop doing X because it's dumb, doesn't axiomatically require that the advocate of inhibition to undertake Y which isn't dumb.

Secondly, of the 'common charter', what goals and aims do you feel that most organisations will unite towards? (increasing research funding in proportion to the burden of disease for example?)

My guess is that there would be little difficulty in getting agreement on basic issues - there are no doubt certain personality issues to be overcome and one or more organisations may consider that co-operation was not relevant. A large US organsation may feel that a shared philosophy with a UK organisation was irrelevant because the potential for US federal funding of research would dwarf even the most optimistic commitment from the UK, and a large US orgniasation may see co-operation with smaller US orgnisations as a dillution of its own message. The demand for such co-operation would likely need to come from a broad community base - again that's a futher challenge to those who contend that there is a single identifiable M.E/CFS community to be spoken for. People are free to do what they please but if they invoke a collective will, then (in a fair society/community) the rest of the collective gets to have a say.

IVI

 

[Valentijn]

My interpretation was that I was experiencing a surge of hormones and neurotransmitters, possibly related to the fluctuating thyroid levels, or possibly purely a symptom of the ME.

People also talk about anxiety when they're out shopping etc. I really have to wonder if it's "primary" anxiety, or just the feeling that comes with insufficient blood flow to the brain when standing up to long. Or "secondary" anxiety from being anxious about the physical issues (PEM/PENE and OI) that usually result from being out and about.

 

[Bob]

People also talk about anxiety when they're out shopping etc. I really have to wonder if it's "primary" anxiety, or just the feeling that comes with insufficient blood flow to the brain when standing up to long. Or "secondary" anxiety from being anxious about the physical issues (PEM/PENE and OI) that usually result from being out and about.

Yes, I agree, there could be various causes of anxiety. Obviously, people can be fearful that they might become too exhausted to return home easily. Or if they feel light-headed, they might be anxious that they might pass out. Then there's the sensitivity/reaction to noise and light that some people have: This could lead a person to feel over-stimulated which could mimic or cause anxiety. Or, like you say, Valentijn, low blood flow to the brain, or hypotension could cause anxiety. Also, some ME patients might experience low or high blood sugar levels. Or, as I believe happened in my case, there can be thyroid and other endocrine fluctuations, and neurotransmitter fluctuations.

I think most of this has been documented in the literature.

 

[alex3619]

Imagine there is a very mean invisible man with a stick. Every time you go out, he beats you but nobody else can see him. If you do more than a little, he beats you more severely. Nobody believes you. You can't get help. Wouldn't you feel more than a little anxious? How would being treated for anxiety get rid of the mean man with the stick?

The "mean man with a stick" is PEM/PENE. I have said it before, if activity induces anxiety as opposed to a range of issues, then its secondary to the physical problems, and while treating it might be helpfull, its not rational to presume that dealing with anxiety will address the cause of the issue.

Bye, Alex

 

[Enid]

"we fail to understand that such scans show significant changes in every psychiatric disease" says Pemberton. Well it doesn't apply to ME as my Consultant Neurologist (who found amongst other abnormalties high signal changes on my brain MRI scan) would testify. He did not recommend a little visit to a psychiatrist - rather an expert in the field of ME and he would release all his findings. Max Pemberton it seems is presuming to know more than Neurologists.

Also I don't think we will ever convince though one can hope, the likes of Pemberton - their's is a guessing game. They couldn't even agree about the sanity or not of Anders Brevik in Norway.

 

[barbc56]

Unfortunately, AFAIK, the brain scans for depression, me/cfs, pain disorders and a myriad of other conditions can't be used as a diagnostic tool. In other words a doctor can't look at a scan and diagnose what he/she is looking at.

I think MS is different as far as a pattern but if I remember correctly even then it is sometimes difficult to get a definitive diagnosis until the disease reaches a certain stage.

But these scans do tell us something is going on and is a very interesting area of research for a lot of conditions.

At one time I was fascinated with Dr. Amen's work but he kind of overeached some of his conclusions.

Barb C.:>)

 

[urbantravels]

People also talk about anxiety when they're out shopping etc. I really have to wonder if it's "primary" anxiety, or just the feeling that comes with insufficient blood flow to the brain when standing up to long. Or "secondary" anxiety from being anxious about the physical issues (PEM/PENE and OI) that usually result from being out and about.

I've posted about this before. I have severe POTS, and for the first year or so of my illness I didn't know I had it. I knew I felt very anxious standing in the line at the grocery store, and I interpreted this as anxiety that I would run out of energy and collapse, esp. in a constricted space like that.

This is a reasonable source of anxiety - I've never completely collapsed out in public, but I've come damn close. But the other reason I felt so anxious is because untreated POTS was sending my heart rate over 135 after less than three minutes of standing. Walking slowly around the store wasn't as bad because moving your legs helps return blood to the brain; it was coming to a stop at the check-out that gave me the heebie-jeebies. I had no pre-existing fear of grocery stores, cash registers, or confined spaces with nowhere to sit down.

I've come to understand how many of the things we experience and interpret as "emotional" responses are actually bodily phenomena, and that we hunt around on a post-hoc basis to find an emotion that fits our physical feelings. Before CFS, which sent my body into a whole nother level of sleep difficulties, I used to have a pattern of waking up suddenly in the middle of the night. Did I have trouble sleeping because I was worried about something, or did I wake in the middle of the night because I just had a surge of adrenaline or something, which woke me up fast and sent my heart rate up; and then I lie around and try to remember what I'm worried about; when I find the thing (there's always something available) then I lie around and fret about it, and at that point the physical response and the worried thoughts simply reinforce each other.

 

[Enid]

@ barb 389 - brain scans for a myriad conditions so can't diagnose. At the time of my own (MS ruled out as the disease did not develop and at that time there was no easy blood test for the viral "usual suspects") - however it was the concomitant symptoms expressing that confused my Neurologist - I was obviously not depressed, nor "psychiatric" and he knew it was outside his field of expertise eventually when fitting the pieces together agreed ME. The "pieces" included virtually bedbound, dificulties speaking and swallowing, passings out, intense pain throughout the whole body, heart racings, unable to keep upright, adrenal surges or the opposite etc. At the same time abnormality in the anti-smooth muscle antibodies (usually indicative of auto-immune hepatitis) and hypothyroidism. I really was not up to "feeling" about the situation in any emotional sense though I think the brain damage does include these centres when recalling sudden floods of tears and wondering quite what was going on - but "I'm not unhappy". The situation was clearly "bodily".

Damien Thompson (whatever we think of his onslaught to support Pemberton) did say of his friend diagnosed ME that he thought it was because Docs simply did not understand what was going on yet. Quite so.

 

[Firestormm]

Firestormm. Somewhat related to the issue of asking for evidence: news articles often if not usually use qualifiers such as "allegedly" when covering reports of crimes, even if arrests are made due to evidence and cases are going to court. When it comes to such coverage on ME/CFS however, not only does there appear to be a lack of evidence, but there are no qualifiers such as "allegedly", despite no arrests or court cases.

There's something amiss with this darn 'watch thread' alerts business. After a while it doesn't get picked up!! Apologies I figured the thread had died a suitable death. Though I see the comments on the Telegraph for Thompson were above 2,400 when last I looked - bloody hell. Plenty of fuel in there for the next opinion piece I dare say.

Bio - newspapers and radio etc. also use "" i.e. quotes to apparently circumvent the need in some circumstances to use such terminology. Also if interviewing someone 'live' as it were they might (if a reputable source) assert that it is the person's own opinion being expressed or maybe reinforce the 'alleged' inference - but not always and they don't have to.

Thompson did not feel the need to qualify his headline 'quote' and as I said previously I did find it rather presumptuous of those who did take this opinion - that it was credited to Wessely when in the Nature article he never said it. Could have been anybody could have been nobody.

I would like to think that even Thompson knows who said it and if necessary can be coerced into revealing his 'source' but I also hope it doesn't get that far. Look's like there has been no attempt to refer this or Pemberton to the Press Complaints Commission - at least nothing that has been said anywhere I could see.

All of what I have said above is my opinion (allegedly) and whilst there are laws I understand against 'libel' and whatnot I don't think anyone can prevent some tosser from writing pretty much what he likes in his own opinion column to stir up feelings even among those very people who perhaps shouldn't have felt stirred.

Look at all the shit out there about Wessely and I mean that's personal in that it stakes out a named individual. Thompson and Pemberton were hitting out at an anonymous (at least unnamed in their articles) 'militancy'. Of course if you read the comments that followed you'd get some names.

Anyway, not really sure what this whole debacle has served to reveal. Not sure if lessons might be learned. Not even sure if anyone else thinks having an anonymous 'militancy' isn't such a bad thing as I do. Gives us something to 'blame' the crap on I suppose and every 'organisation' is deemed to have one - might even afford us some credibility at the table.

Must be 'nice' to have a pal/boss like Pemberton who will take 'assaults' on his fellows/pals/contributors personally and feels the need to like the Empire to 'Strike Back' whatever the cost and whatever the degree of insult being made.

On the other hand... maybe I should introduce Thompson to a psychiatrist with better repute than his pal

 

[biophile]

Hi Firestormm. No worries about lateness.

Wessely probably is the source of the quote in question, although the suspected original is a little different:

Wessely says although he is used to being subject to abuse, other researchers were "absolutely appalled" by their treatment. "This will convince another large group of decent scientists to say: oh no, I would rather go find the gene for homosexuality or do work on images of the prophet Mohammed than do this."

http://www.nature.com/news/2011/110603/full/news.2011.347.html

 

[biophile]

Some suggestions for advocacy:

http://thekafkapandemic.blogspot.com.au/2012/10/the-whole-thing.html