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Symptoms and treatment management: NICE guidelines

Discussion in 'Information for NICE guidelines' started by lunarainbows, Aug 14, 2019.

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I would not be too concerned about this, although it is certainly a pity.

    It is easy to see the NICE committee as a faceless group of people with little knowledge of the realities of ME making arbitrary decisions. That is not quite how things are. There are people on the committee who are familiar with Greg's writings. There are several people on the committee who are directly involved with people with severe ME.

    I don't think in fact that anyone on the committee is likely to be ill-informed about the problems of severe ME. It is just that there are differing views about how to manage things. And to an extent those differing views may not impact that much on severe cases because there are no specific treatments indicated. Part of the reason for revisiting of the guidelines made clear at scoping was that there needs to be more focus on ongoing supportive care. I am sure the committee have that on board. The problem is, I think, acknowledged. As to how recommendations can be drafted, I don't know.
    Barry, JaneL, Starlight and 5 others like this.

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