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TOPIC: Appeal Lost

Re:Appeal Lost 6 years 6 months ago #58779

Actually there are some tests that correlate sufficiently strongly with ME (and sometimes CFS, ME and CFS not being co-identical illnesses) to be usefully indicative, albeit not yet broadly known about.

For example, there is a blood test which examines various aspects of mitochondrial function; the degree of mitochondrial malfunction corresponds to the degree of incapacity/severity of the condition (there is published peer-reviewed research on this, but I don't have the ref to hand).

It is also possible to have more generalised tests done that can indicate the health status of the body. For example, cell-free DNA (another blood test). High results on this indicate a very sick body.

These and other tests that can be useful in recognising and assessing ME can be done through private clinics, and can help in suggesting ways to manage the condition (as well as giving concrete objective data that matches your subjective experience). It is not necessary to be able to attend the clinic to have the tests necessarily, as blood can be taken locally by somebody suitably qualified using materials sent out, and mailed back, so the severely affected are not excluded from accessing this option. It is expensive though).

The tests are not, as far as I'm aware, available on the NHS, and even well-informed NHS staff and consultants don't seem too clued up on them as yet.

One can also send copies with benefits applications. I did this; I can't say whether it helped, but no one from the DWP or ATOS has disputed the reality or severity of my ME.

regards
Rainbowlight

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Re:Appeal Lost 6 years 6 months ago #58780

  • originaldave
B) Rainbowlight wrote:

Actually there are some tests that correlate sufficiently strongly with ME (and sometimes CFS, ME and CFS not being co-identical illnesses) to be usefully indicative, albeit not yet broadly known about.

For example, there is a blood test which examines various aspects of mitochondrial function; the degree of mitochondrial malfunction corresponds to the degree of incapacity/severity of the condition (there is published peer-reviewed research on this, but I don't have the ref to hand).

It is also possible to have more generalised tests done that can indicate the health status of the body. For example, cell-free DNA (another blood test). High results on this indicate a very sick body.

These and other tests that can be useful in recognising and assessing ME can be done through private clinics, and can help in suggesting ways to manage the condition (as well as giving concrete objective data that matches your subjective experience). It is not necessary to be able to attend the clinic to have the tests necessarily, as blood can be taken locally by somebody suitably qualified using materials sent out, and mailed back, so the severely affected are not excluded from accessing this option. It is expensive though).

The tests are not, as far as I'm aware, available on the NHS, and even well-informed NHS staff and consultants don't seem too clued up on them as yet.

One can also send copies with benefits applications. I did this; I can't say whether it helped, but no one from the DWP or ATOS has disputed the reality or severity of my ME.

regards
Rainbowlight



I am not disputing that there is ME I think my wife had it some years ago, but "correlate sufficiently strongly " is still not the same as a standard test with known and repeatable results time after time


I dont know the test you talk of

mitochondrial function... but do know such cells have a lot to do with energy and so the more them cells are damaged the more some one would be weak ... the organ most at risk would I think be the heart too ... let me know if you find the paper would be a good read.. also tell me if I am on target

cell-free DNA ? thats intersting I have known that used for screening for downs syndrome but only antenatal


the problem is with ME/cfs its not had the money spent on research needed to move it on so there is a proper test and till there is people will suffer :(

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Re:Appeal Lost 6 years 6 months ago #58782

As I see it, the actual diagnosis isn't terribly relevant. What matters is whether you can accrue enough points according to the descriptors, not why you can or cannot do something.

Let us suppose that a doctor thinks that ME is all in the mind. You still have physical symptoms. Many mental conditions have physical symptoms, including fatigue, so he can say you have depression or factitious disorder or whatever, but it makes no difference. You have the same symptoms, the same ability or inability to do something.

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Re:Appeal Lost 6 years 6 months ago #58784

  • originaldave
Survivor wrote:

As I see it, the actual diagnosis isn't terribly relevant. What matters is whether you can accrue enough points according to the descriptors, not why you can or cannot do something.

Let us suppose that a doctor thinks that ME is all in the mind. You still have physical symptoms. Many mental conditions have physical symptoms, including fatigue, so he can say you have depression or factitious disorder or whatever, but it makes no difference. You have the same symptoms, the same ability or inability to do something.


I agree thats how it should be once we have a test for ME?CFS something else will come along :) with no tests

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Re:Appeal Lost 6 years 6 months ago #58786

Hi Dave,

OK, my phrasing was meant to acknowledge that the mito test has not yet been adopted as a diagnostic test. But yes, the evidence so far suggests it is a repeatable, reliable and accurate measure for the illness. There are other possibilities for a diagnostic test too, based on specific abnormalities in the body, but none has yet reached the stage of adoption. The latter can take years, just like the adoption of a new drug.

Yes, you are right on the money about the mitos. They are like the batteries of the body. Mine are mostly flat, struggle to recharge, never recharge more than a few percent, and discharge very quickly. No wonder I'm exhausted :laugh:

Regarding the heart, right again. In fact one prominent american MD who specialises in ME and CFS regards such patients as being in ongoing near heart failure.

Totally agree about the research, although there is already more biomedical evidence than people probably realise.

regards
Rainbowlight

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Re:Appeal Lost 6 years 6 months ago #58787

Yes, completely agree Survivor.

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