Meeting my MP – what should I ask?

ME Essential Summer 2024

As we are heading for a general election later this year, I thought it would be useful to see if I could arrange a face to face meeting with my MP. To my surprise I have been given 15 minutes at his local ‘surgery’ in a few weeks time. What are the most important issues that I need to make my MP aware of?

READ ANSWER

Driving

ME Essential Winter 2024

Do you think ME/CFS should be a notifiable medical condition with the DVLA?
Should people with ME/CFS notify the DVLA that they are still driving?

READ ANSWER

Classification : ME/CFS

ME Essential Autumn 2023

I know that ME and CFS are both classified by the World Health Organisation as a neurological disease. But I’ve also seen statements on the internet to say that ME is now being classified as an autoimmune disease. Is this correct?

READ ANSWER

Treatment: Modafinil

ME Essential Summer 2023

I have had PoTS and ME/CFS for over 10 years and now have Long Covid as well – if that’s even possible as perhaps they are the same thing anyway? My question is about a drug called Modafinil as I have been offered a trial of this treatment from my PoTS consultant to help with my fatigue. I have looked online and can’t find a lot regarding its use in patients with ME/CFS. Please could you point me in the right direction for any research on this or anyone with ME/CFS that has any experience of taking it. One of my main concerns is that it will create a false energy high, so that I will want to do more, then I will end up with worse PEM and crashing. Another potential problem is that I already have mental-health issues as some of the side-effects are mental-health related.

READ ANSWER

Medical Disclosure

ME Essential Spring 2023

I have quite severe ME/CFS and am currently unable to work. However, my wife has a well-paid job and we are probably going to have to move house to another part of the country later in the year. As this may involve taking out some new insurance cover can I check what the position is regarding the disclosure of my medical information to an insurance company? Whilst I can understand why an insurance company would find it helpful to know about someone’s state of health, I am concerned about the accuracy of the information that my GP may be asked to provide – as he takes a rather sceptical view of ME/CFS and I very rarely see him.

READ ANSWER

Vaccinations: Covid-19

ME Essential Spring 2023

I appreciate that people with ME/CFS can have an exacerbation of symptoms following any type of vaccination, and that a significant minority have had a more severe and persisting adverse reaction to the Covid vaccines. However, I am still keen to continue having this protection so as long as the Covid-19 virus remains in circulation.

My 2022 Autumn Covid Booster resulted in a moderate exacerbation of ME/CFS symptoms – which lasted for about 4 weeks. So I’m querying whether it might be more sensible to allow people with ME/CFS to split the dose in half and have two smaller doses on two separate occasions. I discussed this with my GP but he wasn’t very supportive and has declined to do so. What do you think?

READ ANSWER

NHS: In-patient services

ME Essential Summer 2022

We are elderly parents (both in our late sixties) who have been looking after a daughter with moderate to severe ME/CFS for the past 20 years. Like many people severely affected she is not receiving any care from a hospital-based ME/CFS services and she only receives very occasional visits from the GP – who admits that she has no idea about how to manage people with severe ME/CFS. We have, however, been fortunate in obtaining some good social care support.

We are becoming increasingly concerned about the overall state of our daughter’s health and having discussed this with the GP who agrees that she requires a thorough medical re-assessment. The problem is that the local ME/CFS service does not carry out domiciliary (home-based) visits and they don't have any in-patient beds for assessment or management of people with severe ME/CFS.

The GP is willing to make a referral outside our local area but does not know of anywhere suitable. We would also be willing to pay for a private hospital if we were sure that this would be suitable. Are you able to help?

READ ANSWER

Treatment: Vitamin D

ME Essential Spring 2022

Can Vitamin D help people with ME/CFS and are we more susceptible to Vitamin D deficiency?

READ ANSWER

Functional Limitations: Limb Movement and Use

ME Essential Summer 2021

A friend of mine has had severe ME/CFS for several years and been totally bedbound for the last three. At the beginning of March, within the space of about forty eight hours, she suddenly lost most of the normal functioning and strength of her arms and hands. By turns, depending on which arm had been used the more, first one and then the other hung useless and intermittently painful by her side for a few days. She has since regained some of what she lost but the improvement now seems to have plateaued off. Her fingers remain swollen, she can barely hold a pen to sign her name and needs both hands to operate the switch of her bedside lamp. We surmise that these difficulties may have their origin in inflammation of nerve cells but we are aware that this cannot be proved. We would like to know whether similar problems have been documented in other cases and, if so, whether there is any treatment that has been found helpful.

READ ANSWER

ME/CFS Prognosis

ME Essential Autumn 2020

There is conflicting information about what happens to people with ME. My GP thinks most people get better – although it may take a couple of years! But if you look at internet discussion groups most people believe that while some people will improve nobody ever returns to full normal health. What is the truth?

READ ANSWER