‘Biological breakthrough offers fresh hope for ME sufferers’ | The Times | 23 April 2013

April 23, 2013

From The Times, 23 April 2013 (story by Hannah Devlin, Science Editor).

Scientists have found compelling new evidence of an underlying biological cause for the constant fatigue suffered by ME patients.

The study revealed abnormalities in the muscle cells of ME patients, which are likely to contribute to feelings of tiredness and the inability to cope with sustained physical activity that many experience.

An analysis of muscle biopsies suggested that the cells had undergone substantial changes, making them less able to cope with exertion.

The finding shows that, whatever the initial trigger for ME, which affects more than 600,000 in Britain, the condition leads to a cascade of physical changes right down to the cellular level.

Some patients still report facing stigma due to popular misconceptions that the condition is “all in the mind”, despite growing evidence that ME has real physical symptoms.

Julia Newton, Dean for Clinical Medicine at Newcastle University who led the study, said that the latest science was changing “people's perception of this terrible symptom”.

Professor Newton presented the findings at a meeting in London yesterday marking the launch of a collaboration aimed at generating more research into the disease.

In the study, scientists took muscle biopsies from ten patients and ten healthy but sedentary volunteers.

The muscle cells were grown into small pieces of muscle and then subjected to “exercise” in the form of electrical impulses.

The cells from ME patients produced on average 20 times as much acid when exercised, suggesting an underlying cause for the aching muscles that patients often experience as soon a they begin to exercise.

The cells also showed other abnormalities, such as reproducing more slowly.

“We have found very real abnormalities”, said Professor Newton.

University of Newcastle press release | 23 April 2013

20 thoughts on “‘Biological breakthrough offers fresh hope for ME sufferers’ | The Times | 23 April 2013”

  1. Of course the study will have to be repeated with a much larger group of subjects but it gives me cause to hope. Can anyone tell me where they obtained the figures of 600,000 sufferers? The last figure I heard of was 250,000 but I may be behind the times.

  2. It does give you hope because my gp keeps telling me there is nothing wrong with the muscles in my legs even though walking and standing is soooo difficult

  3. Sadly this was a Fukuda CFS study and there was no control group. So the results have no meaning.

  4. It is indeed heartening to see important biomedical research getting mainstream coverage, we have become so used now to pejorative articles about ME sufferers in the press. I am greatly encouraged by these findings, though we have known for many years about mitochondrial dysfunction, from Professor Behan’s research. Agree, the figure of 600, 000 is bizarre, we always hear of an estimated 250, 000. I do hope this figure has not been inflated by including those who are merely ‘tired’. I have been ill for 30 years now with Ramsay-defined ME. I really am weary for some answers, and for research to be done on patients who have the same illness. Bring on the ICC!

    1. Patients are in desperate need of scientific research that looks at the biology of ME. There have been plenty of biomedical studies like the PACE trial already.

      Until researchers start using a validated objective differential diagnostic criteria then study cohorts will continue to be heterogeneous fatigue. The ICC as another unvalidated subjective criteria would merely compound the same issue.

      Studies also need control arms. The above Fukuda study did not have one, so the results cannot be said to be specific to any illness or meaningful.

    2. I had my diagnosis confirmed by a consultant neurologist about seven years ago but he didn’t specify that I had ME/CFS according to any particular criteria.

  5. JoT, The Times included this statement: In the study, scientists took muscle biopsies from ten patients and from ten healthy but sedentary volunteers.
    At least there was some comparison with healthy people which is cause for optimism.

      1. Yes, that is what they are saying. Your link is to a completely different study, though also headed by Julia Newton. And that study doesn’t need a control group, because it’s not an experiment trying to find differences between ME and the healthy human state. It’s a study that’s documenting an already proven process (and all the studies that prove that process *did* have control groups!), using MRI scans.

        And IIRC, she doesn’t say that ME is absent of CNS involvement, she says quite the opposite – that autonomic dysfunction is a key part of the disease, and that the abnormalities in muscle and circulation provide a way of showing that.

        1. All studies need control groups or results are meaningless. They haven’t found a proven process, they have obtained data that may or may not be correct. Something that is not possible to determine without a control group. This work also doesn’t concur with the CNS studies and the WHO classification. This is a quote from Newton’s paper.

          “Although conventionally CFS has been considered to be a disease with primary CNS pathologies and secondary peripheral consequences, our results point to possible alternative disease mechanisms.”

          I assume then there is no published paper to go with these articles?

  6. In my novel, my character Helen speaks, with black humour, of having ‘too much lactic acid in her legs’. I am pleased that this has now been validated as 20 times too much…

  7. joT
    Why are you always so negative?
    This is good news and as Soloman pointed out there was a comparison group. The team at Newcastle are doing a great job and I for one would like to thank them very much for all their hard work. Sadly ME is a hard illness to look at and yes not all studies are perfect, but please try to be just a bit more positive and grateful to groups like professor Julia Newton and those like her who are really trying to help us. I have a diagnoses of ME using the Canadian Criteria and I think it is the best one to use, but we do have to take into account that we can’t always have everything just perfect. ME is very complex for example I also have POTS which is a part of my ME. Please try to be more positive I understand your frustration, some of the studies are not so good, but do you really have to just hit out at all of them, please see the positive side in what researchers are trying to do for us.

    1. There is no such thing as research that is of a positive or negative nature and all research is peer reviewed. However in this case it cannot be peer reviewed without a paper.

  8. Could the MEA post which research this applies to or is this not published? In which case why is a non peer reviewed work being reported in the press?

  9. PACE was NOT a biomedical study.
    It was just folk (psychiatrists) messing around with subjects in a vague attempt to fiddle some results from some “interventions” to support psychological theories.
    Rubbish in -> Rubbish out.

    This is quite different, JoT. This is lab-based biochemistry. Real science. In test tubes. With real, testable, repeatable, measurable results.

    Not subjective questionnaires!

    The control is well-known normal and established muscle function, which produces normal amounts of lactic acid.
    While I agree, the use of the right criteria is of paramount importance… who in the uk has been diagnosed using the correct criteria?
    Using Fukuda and CCC isn’t ideal, but better than many others and *will* capture a reasonable number of folk with real ME and exclude most with other conditions.
    Finding real differences in the biochemistry of muscle function cannot be disputed.
    I have no diagnosis at all. (although I think I might have had “chronic fatigue” written in my notes 10 years ago)
    I know I’m not “fatigued”, I know my biochemistry is f***ed, I’ve known it from the start – because of my abnormal lactic acid response – I’m reasonably well aware of my biochemistry.

    These results DISPROVE the “deconditioning” nonsense.

    Further studies will only CONFIRM these results.
    Use of the correct criteria and more subjects will make the confirmation EVEN MORE significant.

    Roll them out, please!

  10. This study is additionally fascinating because the muscle cells were grown/cultured before the testing.
    So it shows that whatever the problem is, it must be genetic or mitochondrial – because the problem has also been replicated during the culturing – it’s *in* the new generation of cells.

  11. The Name ME/CFS should be dropped completely these are all 100% ‘undiagnosed’ types of Ehlers Danlos Syndrome I think this Association needs to spend time with Dr R

Comments are closed.

Shopping Basket