Who diagnoses ME/CFS?

[Golfer15]

Hi, I have been researching ME since my GP mentioned that it could be a possible diagnosis about a month ago. I saw the GP yesterday as he had some results of tests which he sent me for, such as blood tests, CT scan, lung xray, physician consultation. The tests were all clear, so I said to him what is next as I still have some problems, like tiredness, dizziness, breathlessness, confusion, lack of concentration etc. I mentioned the possible diagnosis of ME. I have read that these symptoms could be linked to ME and I have sent messages here recently and people have been helpful saying this could be ME. I just need answers why I feel like this.

The GP said he cant diagnose ME so he is sending me to a specialist in Southampton! I live on the Isle Of Wight.

I hope that this person can tell me what is wrong with me. It seems like Im being passed about. I saw a general physician at the local hospital who said I have systemic depression, this is too general.

I know this is difficult to diagnose. I only want a diagnosis so I can adapt my lifestyle to the symptoms. It is easier to tell others what is wrong with me if I have a diagnosis too. Not to mention for benefit reasons, as I have been told by the medical assessor that depression is not a disability! Maybe they will listen if I say I have ME.

I cannot work full time and have to pace myself as I get so tired. People think Im lazy as I have to rest several hours a day!

I dont know what to do next as my GP said he will `try` and find a specialist to send me too.

How have other people been diagnosed, and how long does it take.

Thank you

David

[joannie1964]

Hi Golfer15

I am new to this website and have joined in the hope that we can all as sufferers support each other. So sorry to hear about your poor health which I have to say resonates with me vastly. first , GP's that are knowledgeable about ME/CFS are few and far between but I am surprised that he says he can't make an initial diagnosis. There are protocol/guidelines on the NICE website which is the National Institute for Clinical Excellence (NHS) on how gp's approach this awful condition. It is a diagnosis by exclusion that is the symptoms have to be present for 6 months and relevant blood tests are done to rule out anything else. Once the GP does his part he then refers you to the ME specialist, we have one in central Sussex and there is one in Hampshire.... in fact you could google ME/CFS support groups Hampshire.

As for medical assessors they are not great and people in general do not understand the condition. Its like a hidden disability. I have recently had to take early retirement form my career as I have it and fibromyalgia and struggle on a daily basis. Getting a diagnosis can take a long time particularly as there are so many people suffering with it now. I totally understand how bleak it seems, and your wishes to get on with your life. I still four years on struggle with acceptance because in my head I feel young but my body tells a different story.

I hope you get some answers, don't give up, ignore those who negate your condition and rest assured you are not alone in this.

x

[Golfer15 in reply to joannie1964]

Thanks for your message. I have googled ME support groups but not found many very close to home. My GP sort made an initial diagnosis when he said we could be looking at ME/CFS if all the tests are clear. Which they have been.

I will wait to see if he sends me to see a specialist.

Good to have the support. Keep in touch.

David

[joannie1964 in reply to Golfer15]

have you checked this link hantsmesupport.co.uk/ ? They might be able to help. Keep on your doctors back! Good luck

Jo

[Golfer15 in reply to joannie1964]

Thanks for this link. I have joined the group. Looks good. Where do you live Jo.

David

[joannie1964 in reply to Golfer15]

Hi David

I live in Brighton. I am also on Facebook and there are good fb pages related to cfs and fibromyalgia if you are on there.

Jo

[Golfer15 in reply to joannie1964]

Thanks Jo. I am on facebook to and I have found the ME support Group. As it is ME awareness day there is some interesting blogs on there.

What is your surname. Maybe we could chat on there.

David

[joannie1964 in reply to Golfer15]

Hi David I'm Jo Everett. Send me friend request and I'll accept. Be nice to chat with someone who understands.

Jo

[Golfer15 in reply to joannie1964]

Hi Jo, which Jo Everett are you. There are three on fb. I agree, it would be good to chat to someone who understands. David x

[joannie1964 in reply to Golfer15]

The one that says Saint gregorys school

Jo

[Golfer15 in reply to joannie1964]

Sorry Jo, but still cant find you on fb. I must be missing something. I am David Rowe from the Isle Of Wight. My picture is here too. Please send me a friend request.

David

[joannie1964 in reply to Golfer15]

Ok David I'll have a look

Jo

[joannie1964 in reply to Golfer15]

David is the picture on here the same as your fb picture?

Jo

[Golfer15 in reply to joannie1964]

Yes it is the same photo.

x

[Hidden]

First of all "I saw a general physician at the local hospital who said I have systemic depression, this is too general" No general physician is skilled enough to make a diagnosis of depression (especially a made up one like systemic depression - depression can be a systemic illness but there is no such thing as systemic depression 20 years in psychiatry taught me that).

AND to be told depression is not a disability - fu(k me but I have seen people depressed less able to function than people in their final months of cancer!!! What quacks are you seeing and STOP!!!

If you are in the UK or Ireland depression is seen as an illness and the psychiatric manuals for diagnostics - ICD-10 and DSM-V both state it is an illness.

Dr William Weir, (Harley St ka-ching) 02074678478 is meant to be fantastic he's over the web and people here have seen him and think he understands CFS well. Mind you I have been waiting several weeks for a reply.

Good luck.

[Golfer15 in reply to Hidden]

thanks for the reply

[TheLadyOfShalott]

Hi David

The only way to make certain that you have M.E is to have a SPECT and/or Xenon SPECT scan of your brain. There are ALWAYS abnormalities on this type of scan if you have M.E. If you can locate one around your neck of the woods and can attend, then I highly recommend this as your first port of call. Don't be the least surprised if you have to pay privately but the cost of knowing one way or the other is worth it. If your SPECT/Xenon SPECT is clear, then it's definitely not M.E. It's a myth that there are no tests to diagnose M.E, perpetuated by the NHS, media and government for various vested financial interest groups. It's true that there is no ONE test for diagnosis but this is true also of Multiple Sclerosis. MRI brain scans will also show abnormalities in 78% of M.E patients. A genuine case of M.E is always of acute onset from a viral infection affecting the central nervous system. You might also want to look into hypothyroidism. Many GPs only test TSH, believing that it's the gold standard test but that's not the case. You need a battery of thyroid tests to get a true picture, and the reference range at labs often mean results are given as 'normal' when that's not the case. I recommend joining the Thyroid UK community on here to give you more info.

[Hidihi]

Hi David. do have your b12 and Folate levels checked.

[ALKT]

usually after six months of being diagnosed with a post viral fatigue type disorder they change it to chronic fatigue syndrome a meaningless umbrella term to fob people off . check out the H B F for me website it has the most accurate info i have come across .

[LindaC in reply to ALKT]

Sorry ALKT, this is long ago, but can you of anyone tell me what 'The H B F for me website' is? Thanks and hope someone is still around to answer this one. xox

[ALKT]

humming bird for m.e .

[Frodo]

Although your tests were clear, the tests do have limitations and the 'normal' range can be too broad. B12, for example, as someone else has mentioned will often come back within 'normal' range when the person is highly symptomatic. There can be many reasons for a deficiency and the autoimmune version is known as Pernicious Anaemia. But you can have multiple symptoms, similar to what you describe, without actually having anaemia. Unfortunately there are no or very few specialists, the currently available tests are inconclusive, and most GPs don't seem to be aware of it, or how to properly test or treat.

*NB - I'm not saying you do have this condition, but it's definitely one to be aware of as you try to get your diagnosis.

[Golfer15 in reply to Frodo]

Thank you for this reply. I still get fatigue really bad. When the gp is back to normal I will have another chat with them.

[stravinsky1]

It can be difficult to get a diagnosis. The specialist maybe a an ME specialist. Mine was a psychiatrist who I was referred to by the sleep clinic. Keep pushing if you don't hear anything. In the meantime keep a diary A for activity and I don't mean running etc . Making a cuppa, reading, having a shower are all activity. R for rest and S for sleep. That way you can track how you are feeling and the specialist has a starting point.

I wish you well