Friday 14 December 2012

Battlers in the ME/CFS Wars!

I abhor conflict. I intensely dislike argument (as opposed to debate) for its own sake. I find folk who goad others objectionable. I hold intemperance, discourtesy and disrespect towards others as vices. Unreason and illogicality are symptomatic of ignorance.

Unfortunately every day I encounter these foibles in my interactions between individuals on social media, such as Twitter and Facebook, on blogs and in the comments sections under Media articles.

Their expression demonstrates a weakness of spirit by those engaged and reveals much about the writers: their bile, their hates, their bitterness, their insecurities.

Perhaps no where else do I see such negativity as amongst those on the various sides, and indeed within factions on those sides, of the ME/CFS issues. Professor attacks professor; doctor slings mud at doctor; sufferers squabble with each other. The levels of mutual suspicion and antagonism might be considered laughable if it were not for the inexorable consequences. It is pure folly!

Where in all this diatribe is the coming and working together to the benefit of patients and the advancement of medical science? Resources, time and energy are being squandered for no material gain. It has to stop and now.

I personally would try almost anything for my condition to ameliorate and have tried many things. I will give it a go whether it is an off-licence drug, a physical activity or a psychological approach to get better and I do not care one iota for all the petty - for that is what they are - opinions. I do not give a fig what the illness is labelled, just uncover what are the cause(s) and try to discover a treatment or treatments that is/are effective.

It's time to calm down, don thinking caps and try to find a route-map out of this asphyxiating infirmity. Please! I do not want to remain in my bed-cell or wheelchair for the rest of my life.

[Image description: five persons round a table smiling, two are shaking hands across the table; another stretches out a hand. © Image courtesy of Ambro /]


  1. After 27 years living with ME, I've come to the conclusion that we're not dealing with a single, quantifiable, condition. Not a popular view, I know.

    Thus, an all-encompassing cause is unlikely to be identified, likewise a one-size-fits-all cure.

    That it's a physical illness I have no doubt, but it's a mistake to claim that it has no psychological aspects, not least because pretty much all chronic illnesses do. I was never depressed, for example, prior to ME.

    I know many people who are chronically ill, some seriously, some less so, and not one of them is unaffected by depression, or worse.

    Mental illness, isn't a cause of ME - it's worth stressing that for the hard of thinking - but it is a major factor in the symptomology.

    So, what do I think it is? Ha! If I knew that I'd be on my way to a Nobel Prize - but I do think, based on my own experience, and the people I've known with ME over the years, that it might well be IN SOME CASES an extreme, physical, response to equally extreme stress. I've read of people who claim their ME started after a traumatic car crash, for example.

    Whether that stress is caused by illness, or by other factors, like illness, doesn't seem to matter - the end result appears to be broadly the same.

    Take my case as an example. In 2003 I was struck by lightning. While I wasn't burned - I was zapped by the leader stroke; had it been the main stroke I'd have been a greasy patch on the grass! - it literally fried my feet internally, and trashed most of my joints. I believe it damage my heart, too, but at this remove there's no way of knowing. I mostly recovered, physically, but starting in the autumn of 1984, I was subjected to the most extreme psychological pressure - spending 5 years on 24/7 suicide watch, looking after my severely mentally ill wife.

    In October 1985 I developed the first symptoms of what was later diagnosed as ME, got my first wheelchair, plus IVB and Mobility Allowance, in 86, crashed and burned, and the rest is history.

    Currently I'm suffering from a terminal heart condition and, over the past 2 years (which, frankly, is longer than I expected to be here), my ME has become much worse - and we have a link to stress again.

    I don't think this explanation applies to everyone with ME, hence the caps above, because I think we're looking at more than one condition, but I suspect, if anyone bothers to ask the right questions, that in many cases stress will prove to be a major factor.

    But, hey, that's just me.

  2. In nearly all respects I tend to agree with you Ron.

    I suspect the current label masks several completely separate conditions. For example I am classed as severe on the NICE scale per my consultant, but I am not as severe as those needing feeding-tubes, etc. Indeed, I suspect that eventually whatever title the illnesses are given, they will include the word syndrome as there are just so many co-morbidities attached.

    My heart has been tested several times and scanned: it's hale & hearty! But something is wrong with my head & spine, other than the OA. And something is wrong with my ability to absorb nutrients. Blood tests - explicitly disapproved of by NICE - demonstrated this.

    What I am really trying to get at in the article is the need to stop fighting and in-fighting as they are futile. I can but hope!

  3. I'm not sure one can expect everyone to agree on everything. In politics, we don't expect everything to support one party, for example. People can have different ideas how to make the world a better place.

    Me personally, I've read the CBT and GET manuals and believe the model for the illness is flawed and believe the chances of treatments that will make a dramatic difference to my health becoming available relatively soonish are being reduced by the big focus on them. I don't see why I should have to agree to support them just because they are in situ as the so-called evidence based therapies for the condition.

  4. I agree with you TKno2.

    However, my point was not about all agreeing, but about pointless attacks and arguments and the manner in which these are carried out.

    I have had CBT and can say that it helped me to develop a much more positive outlook on my illness. I am still ill though. It is my well-being that has improved in this respect. I have not been depressed since having it, other than a brief period 7 years ago after moving home.

    As to GET, I personally cannot see that it can be justified whatsoever, given that there is quite some evidence to demonstrate oxidative stress etc. I personally am banned by my NHS medical consultant from exercising and she also strongly advised me to walk no more than 100m maximum each day. Notwithstanding, some sufferers benefit from physiotherapy, others from hydrotherapy and yet others from paced exercise.

    Given what Ron stated above, if there are several different conditions, this might explain why different treatments suit different folks.


    1. And, of course, many people who are "cured" subsequently prove not to have been. The most high-profile case is Esther Rantzen's daughter who's been "cured" three or four times to date.

    2. Well, it's always possible that the poor lass has/had more than one condition in addition.

  5. I suppose it depends what one sees as pointless; different people believe some issues are more important than other things (while other people may see discussions and disagreements on the same issues as relatively pointless)! But I agree where people can work together, that's good.

    There are lots of elements to CBT - it's not really just one treatment. My main problem is with the graded activity/exercise element of it for ME/CFS.

    Your NHS medical consultant has an interesting perspective on exercise. Probably a useful one but pretty much the diametrical opposite of the position of some other consultants, which shows the complexity of what we are dealing.

    1. I perceive a lot of the arguments nothing more than discussions of semantics or expressions of hubris. The crux of the matter is to pursue doggedly causes and valid treatments. In my opinion everything is secondary or even tertiary!

      She's an endocrinologist and both she and her number two specialise in M.E./C.F.S. They are careful to tailor any treatments to the individual rather than having a dogmatic one-size-fits-all approach. She believes she can help me partially recover, but we are looking at a time-scale of years a sI can only cope with so many interactions in any year. This year we started to look at and address nutritional problems. I appreciate the fact that I am very lucky to have her on my side.

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    4. "The crux of the matter is to pursue doggedly causes and valid treatments."
      But how does one do this? Most people aren't offered potentially curative therapies currently. Many doctors believe nonpharmacological approaches are all we need.
      The MRC research strategy in 2003 said research into causes wasn't necessary to satisfactorily treatment a condition such as ME/CFS. This is the position of many in the field. Similarly, the Royal Colleges report in 1996 only thought there was need for very limited biomedical research. There are huge differences in views and it isn't necessarily possible to unite behind all experts.

      (In case anyone wonders, I just deleted to add in a little more)

    5. "The crux of the matter is to pursue doggedly causes and valid treatments."
      All the focus on GET and CBT has slowed down progress in my mind. So to bring about a better understanding of the causes and to make available valid treatments, in my mind, one of the best ways is to highlight that GET and CBT aren't the answer. Patients need more. It may not be "positive" but some people have to do it.

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  7. CBT is a useful tool to anyone with a chronic illness not just ME/CFS.

    As far as I can see other than a vociferous & powerful minority (in UK, US & continental Europe), the global consensus is that GET as currently profiled is not helpful. However, individual pacing does seem to work for some. Similarly for other forms of exercise.

    I have not suggested that we all agree on what research to pursue; I am affirming that it is necessary to unite around the goals of discovering causes and potential treatments, in short to look forward instead of endlessly harping on about the failures of the past.

    We need more and better research into the possible physical causes, but as Ron hinted above, the role of psychological stressors needs to be adequately investigated too. This latter research has ramifications not solely for ME/CFSers but for sufferers of many other conditions.

    To this end our energies would better be used in lobbying & cajoling MPs, the Media and those in power to pursue OUR demands as opposed to those of vested interests, by raising money for research projects, for the national ME tissue/blood repository and for lobbying.

    We are divided and thus the biopsychosocial model reigns to our detriment.

    Social media provides us with the tools to pursue & achieve our goals. We need to seize the opportunities lest another generation is left to rot in their bed-cells.

  8. Here's a link to detailed extract from a CBT manual for CFS: . I don't accept such a program is necessarily helpful. CBT can involve quite different things depending on the condition or disorder being treated.

    Agree with you that we should do what we can to raise money for research.

  9. Above I stated that I have had CBT and it has helped me. I have severe ME per NICE guidelines and per my NHS medical consultant. CBT has helped me with my well-being. So given your statement you must believe I am lying because I have already added caveats to all treatments referred to by saying that some folk find them helpful. CBT might be a treatment you do not believe may be helpful to you yourself, but that does not mean it might not help others. There has to be an openness to all possibilities. As stated above by both Ron & myself, it may turn out that ME/CFS is in fact several separate conditions. Therefore it is quite possible that the different types will respond to different treatments. This is using logic & reason.

  10. I was responding to your statement: "CBT is a useful tool to anyone with a chronic illness not just ME/CFS." There is different types of CBT. My guess is the program you undertook wasn't the one in the manual. Rather than lash out at me I would ask you to read the extracts I have highlighted.

    Here's a sample extract:
    Because passive CFS patients are hardly active anymore, they start their activity program as soon as possible. Most of them will choose walking as a buildingup activity. The directive here is to start with a 1-minute walk six times a day. Every day the walking time is increased by 1 minute. So, for example, the first day the patient has six 1-minute walks, the second day six 2- minute walks, the third day six 3-minute walks, and so on. The aim is a total build-up of 5 minutes a week for each walk a day, allowing the patient to skip a day or to refrain from raising the duration.

  11. TKno2 You are not heeding.

    The passage you cite is not CBT, it is GET. CBT is a talking therapy. Even so GET has helped some people, whilst making a heck of a lot of folk worse - I know.

    Nonetheless, my article is about moving forward and not harking on about the past and not arguing for arguement's sake - something you are now doing. If this were not my blog, I should not have responded, especially given you are an anonymous avatar. However, I am entitled on this space to have the last word.

    Thank you for commenting and taking the time to read the article. %)

  12. What I quoted from was:
    "Cognitive Behavior Therapy for Relatively Active and for Passive Chronic Fatigue Syndrome Patients"