A A A Text size

Scottish Parliament discussion of M.E. during Petitions Committee

January 30, 2019

Thursday 24 January was a busy day for the M.E. community with debates being held in both UK and Scottish Parliament.

The Scottish Petitions Committee was attended by Scotland’s Chief Medical Officer, Catherine Calderwood and Scotland’s Health Secretary, Jeane Freeman in response to a petition created by Emma Shorter of ME Action Scotland last year. Discussions began with the following statement from Jeane Freeman:

"I'd like to start by making a fundamental but important point to people living with M.E. in Scotland and that is I believe you. I believe that this disease is a limiting disease in terms of quality of life. I hear what you're saying to us and your experiences matter to me as Cabinet Secretary of Scotland."

Following from this, the committee continued to host a positive discussion regarding issues that people with M.E. face. When discussing M.E. and the issues that surround scientific understanding and treatment of the condition Catherine Calderwood stated:

“We have something that is, in scientific terms, somewhat unusual in that we haven’t got a test, we haven’t got biological markers… We can’t do a blood test or an imaging test that comes back where the report says ‘this person has M.E.’ and therein lies much of the issue. "

“In not having a means of diagnosing, except by exclusion, we also don’t have a cure… so we haven’t got a mechanism by which to create medication or find a treatment through some usual modality through medication.”

It was great to hear leading figures in the Scottish health community speaking so supportively and informed about the condition. Those giving evidence outlined a number of progressive ways that treatment of M.E. in the country would be taken forwards following on from this.

“The statistics show that such a large number of the medical profession do not accept it as a condition I believe it was 50% of general practitioner’s,” Catherine (Chief Medical Officer) stated. “We undertook to write to the chair of our academic medicine board for medical schools, Peter Ruben, and he has distributed that letter to the deans of the medical schools with information highlighting the condition to medical students so that is incorporated in to their curriculum.”

There were also conversations about how the situation in Scotland needed to be improved for people living with M.E. whilst waiting for the outcome of the NICE guidelines:

“What we can do, even whilst we wait for the NICE guidance… is that we in Scotland can set up this working group to tackle issues that we can tackle whilst we await evidence” - Catherine Calderwood

“You say that people shouldn’t be compelled to take treatment which is entirely fair. Do you think that there is an issue however in people being judged when they say ‘I don’t want to do that,’” questioned Johann Lamont. “Do you accept that there is an issue here with people being judged, you may say that they’re free to refuse but that in itself becomes an issue people saying ‘oh they wouldn’t engage- are they being reluctant… whatever feeds in to that narrative?”

In response to this Jeane Freedman said “It is credible to me that that situation can arise… and has arisen. It goes to a lack of awareness and understanding about the condition… It’s fair to say that some of that unfair characterisation exists... We need… raise awareness and understanding in order to minimise the number of people clinicians or otherwise who do not believe that there is such a condition…”

To achieve this a number of suggestions were put forwards:

"We need to look with those living with M.E. what they require in terms of care and support so we're not waiting until we have a better research base & clarity on what treatment options are appropriate... we need to look at what work needs to be done to raise awareness." - Jeane Freedman

“What we can do, even whilst we wait for the NICE guidance… is that we in Scotland can set up this working group to tackle issues that we can tackle whilst we await evidence.” - Catherine Caldrewood

More importantly, Brian Whittle SNP’s questioning of Jeane and Catherine lead to the following conversation:

To summarise, the key themes discussed and actions agreed following from this were:

  • Research – to work with the CSO to see what else could be done and to link with work being done globally.
  • Treatments – the notion of shared decision making between patient and professional. Additionally the right to refuse treatment without judgement or consequence.
  • Education – for medical and educational professionals. Awareness must be raised and professionals should not be allowed to deny that M.E. is a real condition.

We will be following up on a number of the statements and promises made during this petitions committee and will post updates on this shortly.