CFS/ME - an apple/bannana? Says Michael Sharpe

[Enid]

Just a personal note (ME/CFS) - I think it's all on the same spectrum - full blown ME the worst - gradations along the same line though. Right royal battle going on the UK to prise the psychos and their vagaries (CFS how much more vague) out of the disease especially now medical/researches know the pathologies and suspect virals involved.

Missed diagnoses from the start (as B. Hyde) - psychos least able in the science unravelling now. And sit on the sidelines contributing nothing whatsoever except hey this is in our fairyland.

 

[Desdinova]

To me it seems that both White and Sharpe are simply inferring that
1. CFS/ME is nothing more than a collection of symptoms.
2. That there may be more than one thing that cause it (It, being the collection of symptoms).
I interpret the more than one thing, as being/meaning more than one psychological condition.

 

[Enid]

Nothing more than a collection of symptoms is not good enough - hence all the ongoing research and findings. They are not researchers but so full of half baked and ignorant opinions only.

 

[taniaaust1]

The strange thing is I think that the UK has had the correct term all along - M.E. and has only more recently started to espouse the CFS term. The USA on the other hand has used the incorrect term for x number of years despite meaning the same disease state as M.E., whereas the UK it appears is using the term CFS for another condition all together.

Deliberately confusing, muddying the waters? Who knows?

Thou a correct medical term is being used in UK, dont let us forget they went and put a wrong meaning onto the term.

Some of those who have real ME have been left without diagnoses as their doctors wont diagnose ME due to the wrong meaning (cfs defination rather then a ME one) which the UK put onto the term. Many who do have classical ME dont get diagnosed with ME there due to having ME abnormalities showing on test results, this can disclude them from getting a UK ME diagnoses.

I used to know someone online in that situation, his tremors (which were from ME) which doctors couldnt deny symptoms such as tremors and obviously neuro symptoms which showed, ended up getting him discluded there from being diagnosed with ME (due to the Weasley school stuff) so he was left with a diagnoses of "unknown illness".

The above situation shows that the whole ME/CFS thing just wont be fixed by a name change from CFS to ME. As all know England has always called it ME and that is one of the worst countries for those like us.

 

[Enid]

Tania - it's been a battle for years for a correct and agreed name - we have related and in differing degrees an illness (most probably immune dysfunction set up by "something"). So don't lets seperate except for treatment of the most overwhelming symptoms present.

Sorry all the same thing - different degrees.

 

[taniaaust1]

Tania - it's been a battle for years for a correct and agreed name - we have related and in differing degrees an illness (most probably immune dysfunction set up by "something"). So don't lets seperate except for treatment of the most overwhelming symptoms present.

There is already a separation when some of the very sickest of us cant even get any form of diagnoses due to how the illness is being viewed. Discluding those with obvious abnormalities etc from studies etc is separating them.

 

[Enid]

Stick with it tania (hopefully better for you in Oz now can't be worse than the UK who still battle the ignorance of SW and his ilk). We are (millions) and fairly clever now.

In the meantime hypothyroidism and osteoporosis/osteoarthritis (reactive) are very evident for all to see. Curse these people who have held up the real research with their "gee I'm so nice (but ignorant like the middle ages - who's for a burning at the stake ?). That is you SW and all your pathetic acolites.

 

[SilverbladeTE]

Has he seen any? Probably too busy making fruit salad.

More like tossing his salad...

[video=youtube;sY_Yf4zz-yo]http://www.youtube.com/watch?v=sY_Yf4zz-yo[/video]

 

[Megan]

I have not followed UK ME/CFS as close as many here, but I find this apple/banana thread very interesting in the light of another report here recently on the CCC from Crawley/White/Miller. http://forums.phoenixrising.me/show...UK-to-adopt-Canadian-criteria&highlight=ollie. The critical quote being:

"The one advantage of the Canadian criteria over alternative diagnostic criteria is that they require what many would regard as the characteristic feature of CFS, post-exertional malaise (6). This is something that may need incorporating in future definitions to help differentiate CFS from more general fatigue."

To those that have followed things in the UK more closely - are all these people just starting to say these things now, or have they always said them? Is this really a significant shift?

 

[oceanblue]

I have not followed UK ME/CFS as close as many here, but I find this apple/banana thread very interesting in the light of another report here recently on the CCC from Crawley/White/Miller. http://forums.phoenixrising.me/show...UK-to-adopt-Canadian-criteria&highlight=ollie. The critical quote being:

To those that have followed things in the UK more closely - are all these people just starting to say these things now, or have they always said them? Is this really a significant shift?

Peter White has made the comment about post-exertional malaise/fatigue being important before, but I think it's the first tim it's been suggested as being important to change the case definition.

Personally, I do think we are seeing a slight shift in position. Perhaps, despite the hype around the PACE trial results, they recognise that their psychosocial theory has been seriously damaged and they need to allow for a more complex reality.

 

[Desdinova]

Peter White has made the comment about post-exertional malaise/fatigue being important before, but I think it's the first tim it's been suggested as being important to change the case definition.

Personally, I do think we are seeing a slight shift in position. Perhaps, despite the hype around the PACE trial results, they recognise that their psychosocial theory has been seriously damaged and they need to allow for a more complex reality.

Personally if it's not double speak and word twisting as I believe (inferring that it's more than one psychological disorder). Then it's more then likely a distraction to draw our attention away from current developments on the front-lines. And buy them time to better react to and developed a plan to attack in response to the recent Rituximab / autoimmune disease development.

 

[Enid]

Apples or bananas - hope he chokes on them. Prize assess these ignorant died in the wool pathetics whose inabilities to grow with science as we can leaves them so far behind the 21st century as to be middle ages. (What a witch dipping might cure).

 

[Wonko]

IMO it's all misdirection, try and convince the public that we are fruits by argueing over which type, when everyone who's not fruit obsessed can see we are geriatric tortoises.

 

[alex3619]

Hi wonko, I think prematurely geriatric hares might be a better analogy - once we could operate at speed, but now the tortoises seem fast. Bye, Alex

 

[Enid]

I'm much encouraged by your thought of a tortoise Wonko and alex and now the ground doesn't disappear from under me on a local "round the block" I'll take happy thoughts of being just one step ahead of that - things are on the move !.

 

[Sean]

Personally, I do think we are seeing a slight shift in position. Perhaps, despite the hype around the PACE trial results, they recognise that their psychosocial theory has been seriously damaged and they need to allow for a more complex reality.

Agree with that. PACE was their last great grab at scientific legitimacy, and they blew it. Not only did they fail to deliver a knockout blow in favour of their hallowed psycho-social model, in fact the PACE results provided pretty good evidence against it having any important explanatory or therapeutic value. And they know it.

They made a rod for their own back here. Can't claim that PACE was a rigourous scientific trial ('the best ever in this field' boasted Wessely), and then deny the basic results and their implications.

The wheels of good science may grind slow and fitful, but they grind fine and without mercy to those who got it wrong.

 

[Sean]

Perhaps, despite the hype around the PACE trial results,...

I think in their highly partisan and propagandistic reporting of the PACE results they have done themselves serious self-inflicted harm, from which they cannot recover.

They painted themselves into a corner, in full public view.

I am still firmly of the belief that PACE is a disaster for them. They have nowhere to hide now, no matter how skilfully they manipulate the media and political establishment in the short term.

 

[justinreilly]

biophile, that's an interesting study!

 

[biophile]

Reposting reworked deleted post

I would be cautious about the biopsychosocialists' definition and interpretation of post-exertion related symptoms, especially since they seem to erroneously confuse them with the delayed onset muscle soreness (DOMS) that healthy people experience from unaccustomed exercise. The PACE manuals primarily blame post-exertional symptoms on regular DOMS and take it as a good sign that the body is adapting, as long as it is not so severe as to reduce function.

The only possible alternative explanation they mention is a "hypersensitive response to physical activity", but this is ambiguous and could mean anything from organic pathology and abnormal gene/receptor activity (as per Light et al) to a psychosomatic phobic response in keeping with their "fear-avoidance" hypothesis. They also mention the need to avoid too much stress and get enough rest or sleep so the muscles can recover. But either way they put most stock in the DOMS deconditioning hypothesis and maintain that whatever happens it can be successfully treated with graded exposure to exercise (GET) because nothing is objectively stopping patients from doing so.

Descriptions of post-exertional symptoms differ enough to influence reported prevalence, for example in the revised Canadian definition by Jason et al (http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf) it states: "Within a group of individuals diagnosed with CFS, Jason et al. (1999a) found that post-exertional fatigue or malaise for individuals with CFS ranged from 93.8-40.6% depending on how the question was asked. There is certainly a need to standardize the questions used to reduce this source of unreliability. In addition, length of the period of post-exertional malaise may vary from activity to activity or by time period within the person."

I won't include comparative quotes, but just read the descriptions and explanations of post-exertional symptoms from biopsychosocialists vs Canadian definition and ME-ICC (not in above link), it isn't hard to see who knows what they are talking about on the issue and who is mainly groping in the dark even after years of "experience". I found this interesting too, also from Jason et al who developed a 22-item fatigue questionnaire and administered it to 130 ME/CFS patients and 251 healthy controls:

When people with ME/CFS report symptoms of post-exertional malaise, those symptoms are independent of emotional distress, but when the general population report what they think are post-exertional malaise symptoms, their symptoms of post-exertional malaise are significantly related to emotional distress. It is possible that because healthy individuals experience a relationship between emotional distress and post-exertional malaise, they might believe that these two domains are connected for themselves and by inference with patients with ME/CFS, when in fact it is not the case. This ultimately might blur the ability of healthy controls to understand the experience of post-extertional malaise for people with ME/CFS.

Of interest, a similar pattern occurred with the MFTQ factor Energy and PFRS Emotional distress, with a significant difference in the correlations between the ME/CFS group and the controls. Again, it is possible that the general population experiences a relationship between emotional distress and energy problems, they might believe that patients with ME/CFS not only have this same connection, but it might also be perceived by some as causal. In fact, the lack of a relationship between energy problems and emotional distress suggests that these two domains are not related among patients with ME/CFS. This observation is further supported by the finding that the Total MFTQ score among the control group is more highly related to emotional distress than among patients with ME/CFS.

http://dsq-sds.org/article/view/938/1113

 

[biophile]

Descriptions of post-exertional symptoms differ enough to influence reported prevalence, for example in the revised Canadian definition by Jason et al (http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf) it states ...

This URL doesn't work. I tried to edit the post only a few days after I posted it but it wouldn't let me which seems unusual. Someone recently pointed out to me that the URL doesn't work anymore, so I figured I should put the working URLs here:

The Development of a Revised Canadian Myalgic Encephalomyelitis Chronic Fatigue Syndrome Case Definition

http://thescipub.com/html/10.3844/ajbbsp.2010.120.135 (HTML)

http://thescipub.com/pdf/10.3844/ajbbsp.2010.120.135 (PDF download link)