Counter petition to the MEGA petition, brainstorming stage

[Esther12]

As I'm also dealing with flu jabs this morning, interesting to note that this report on a potential serious adverse reaction to the flu jab in ME/CFS came from the staff at the Devon ME/CFS service:

http://www.bmj.com/content/347/bmj.f6705/rr/687260

Sean Lynch did that really poorly thought through defense of PACE (seemingly promoting even worse trial for the future) in a BMJ RR a while back. His involvement does make me think there will be reasons for concern there.

 

[BurnA]

We also obviously receive a large amount of patient feedback from people who go to these NHS clinics

The overall picture is actually very mixed - we receive excellent or good feedback in some cases and mediocre or negative feedback in others

When I hear this I cant help wondering if the whole MEGA study is seriously at risk - will the results even be interpretable if the diagnostic criteria end up being even slightly mixed.

Why jeprodise the entire study and all that money ? Better to have a smaller study, if needs be, if it can be guaranteed to be robust.


To know that the NHS clinics are not the best refferral source but to continue to use them in a study this important seems strange.
I know people do want this study done but there is really no point if the results might be meaningless.

 

[Countrygirl]

Info on Devon ME/CFS service from MEA website below

We receive very little feedback on this particular service

From memory, it has normally been more positive than negative

You could start a discussion on the MEA Facebook page if you want to to get a better idea of the overall picture:

Devon

South and West Devon CFS/ME Service is run on behalf of Torbay and Southern Devon Health and Care NHS Trust at the following address: 3rd Floor, Union House, Union Street, Torquay TQ1 3YA. Administrator: Louise Swann, tel: 01803 219 859 fax: 01803 219 893 email:swdevoncfsme.sdhc@nhs.net

The EXETER EAST, MID AND NORTH DEVON CFS/ME Service is based at the Arlington Centre, Whipton Hospital, Hospital Lane, Whipton, Exeter EX1 3RB, tel: 01392 208 614

The PLYMOUTH service is run on behalf of Sentinel Healthcare SouthWest Community Interest Company at the following address: Express Diagnostics & Treatment Centre, Plymouth Science Park, Plymouth PL6 8BU. Administrator: Trudi, tel: 0845 155 8297 Email:PCHCIC.SentinelClinicalTreatmentService@nhs.net


The Service Manager/Senior CFS/ME Specialist for both the above services covering the whole of the South and West of Devon.
The team currently consists of a medical lead Dr Robert Gardner, Senior specialist Occupational therapists, two specialist Occupational Therapists and two administrators (as below).
The service is an adult community service providing, assessment, diagnosis and treatment for individuals suffering the complex symptoms of CFS/ME. The service is offered where appropriate to all levels of CFS/ME, mild, moderate and severe. 
Along with the treatment approaches advised by NICE guidelines this service is also part of a national group auditing and implementing research and evidenced-based Mindfulness CBT approaches, to support patients psychologically with coping with this condition. The service is also able to provide extensive knowledge gained through patient experience and reporting.

Thank you for posting this information about the Devon clinics. However, it doesn't change the fact that local doctors, both GPs and hospital doctors, do not accept that ME exists as a genuine physical illness. A few do, hopefully an increasing number of them, but they say that they cannot share their opinion with their colleagues for fear of being ridiculed.

I think it would be useful if the team from the clinic held an education event at the post-graduate centre to at least inform their colleagues that ME is a genuine physical illness and that patients should not be dismissed as they so often are at present. So far, the message is not getting through to the majority who are entrenched in their views.

 

[Countrygirl]

Sean Lynch did that really poorly thought through defense of PACE (seemingly promoting even worse trial for the future) in a BMJ RR a while back. His involvement does make me think there will be reasons for concern there.

Fortunately, he has now left.

 

[Countrygirl]

I'm sorry this is taking the thread slightly off-topic and I do hesitate in posting it, but further to the posts above which reference the treatment of patients with an ME diagnosis in Devon, this was written today following an appointment at one of the two main hospitals yesterday. It is to be put on the hospital's FB page. It is too emotional, I suspect, to be taken seriously, but the patient has cause to be distressed. To be clear, this patient believes she has Lyme disease, but the problems seem so similar and the medical profession's attitude towards the condition appears to be identical and therefore I believe it is relevant.

To the male Dr yesterday who thought It was okay to try and humiliate and mock me when I'm incapable of anything other than clenching my teeth in effort not cry. It is because of Drs like you that I had to go to visit the GP six times and was still not taken seriously. Allowing me to become so poorly that I passed out and was rushed into hospital with a sodium level of 103. Because of ignorant brutish skepticism like yours I was forced to try and stand up in hospital, even though It was very clear I was unable to as I couldn't feel my feet. This then caused me to fall pulling my catheter out as I did so with pee going all over the room. Is there a need to remove as much dignity from someone who in that moment is vulnerable and frightened. You are one of those Drs who thinks having MBBS or MD after your name makes you superior and behaving like an ass makes you cool and witty. But unfortunately this is only the case if you are Hugh Laurie and a FICTIONAL character. I think it is criminal that a bullying insensitive Dr such as yourself has a medical licence. Why would you think it's funny to mock me for not remembering things, because in that exact moment, am so fatigued that my brain fog has taken over compounded by my anxiety that had been building prior to my appointment. I was scared, it was and still is, a scary symptom. I hope you are aware that your general behaviour in response to my inability to articulate myself properly since I have been poorly, is why I have lost confidence in participating in lots of conversations. Swap positions for a moment and tell me that you would have been able to answer anything other than 'I don't know' when you are struggling and incapable of unclenching your teeth so tears don't become visible exposing how defeated you feel. I hope that the formal complaint I am going to make, will help you to understand the impact your mistreatment has had and never try to feed your inaccurate sense of self importance and superiority again.

................... a little post-grad medical training wouldn't go amiss.

Now back on topic................................